IEPs Are A Full Time Job

We got the results from the school’s academic and psychological assessments of Jack on Wednesday. It’s 18 pages of assessment results that seem to require a degree in childhood education to understand. I’ve read and re-read the information and googled  my little heart out, but it’s still not clear what it all means.

On the academic assessment, the only issue that showed up was “math fluency” where he rated low average, and a slightly low score (but still considered average) in oral reading comprehension.

For the psycheducational assessments, he’s all over the board. Scores range from ‘borderline’ or ‘at risk’ on the low end to ‘superior’ or ‘above expected level.’ Jack hits every level in some area, which I think is what prompted this note:

“Jack’s unique set of thinking and reasoning abilities make his [cognitive functioning assessment scores] difficult to interpret.”

That is great! And yet…not-so-great. I love that my kid is unique, but being unique makes it quite difficult to identify how to help him be successful in school.

There are many notes throughout the pages of results that state “attention fluctuated” or “drifted off.” This is uneducated speculation on my part, but I’m guessing this is leading to an ADD diagnosis. (He was assessed for this through Kaiser recently, as well, but we don’t have the results back yet. In talking to his dad about the information and going through the process, I think we both feel Jack is likely to be diagnosed with ADD – just without the hyperactive part.)

One thing in the assessment results that stuck out was: “Jack exhibits a processing disorder in the area of attention that is affecting his classroom performance.”

From what I understand from the document and some googling, “slow processing” is a THING but it may or may not be considered a learning disorder (I think that depends on each district’s interpretation). And then, because of the part that says “in the area of attention,” it’s unclear whether this is just a result of something like ADD or if there is something else going on, too.

In any case, the assessments are helping with focusing on areas where Jack needs some help, either through accommodations (like more time to complete tasks) or some sort of specialized education. Naturally, most of what is described is not news to us at all, but it’s helpful to see where Jack is NOT having problems so that we can identify what the likely issues are that need to be addressed.

I guess I’m learning that IEP assessments are not cut and dry – which is why, I guess, there is nothing in these documents that say “your child has a learning disability” or “he qualifies for special education services.”

So, the following things were identified and may represent the source behind the low math and oral reading comprehension scores:

Processing Speed Score (WISC IV): Borderline (lowest score)
Narrative Memory (NEPSY II): Borderline (second lowest score)

Behavioral Issues (based on the Behavioral Assessment Scale for Children 2):

Internalizing Problems – Clinically Significant
Attention Problems – At Risk
School Problems – At Risk
Behavioral Symptoms – At Risk & Clinically Significant

We have a meeting with the IEP team next week to go over what all of this means specifically for Jack. Until then, I will continue to google my little heart out to try to wrap my head around all of this. In addition, I was able to get in touch with a case manager from Kaiser’s Psych department who will attend the meeting with us and be an advocate for Jack. Thank goodness!

I am hopeful that many of these issues will fade away as the chemo leaves Jack’s body; however, it’s good to be prepared in case they don’t. And, of course, there are late effects that can pop up long after treatment is over, as well. Sigh.

For those of you who have IEPs for your children, what resources do you use to prepare for these meetings and help your child navigate areas of weakness? I would LOVE tips!

Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?

Calm and Clean: Little Twig Review

When you wait eight years between kids, it’s likely you’ll be starting over again with all the STUFF. I had saved very little of Jack’s baby stuff – as I wasn’t sure that I would ever have another child – and my head was out of the baby game for a long, long time. So when I found out I was pregnant with Dez, I got to work learning about all the new things that have been invented since I’d first become a mother.

For those of you who have also been out of the baby game for a while, let me give you a little tip. Babies need even MORE stuff than they did eight years ago.

Or so they say.

In order to prepare, I attended MommyCon when it came to San Francisco last year, as well as a “baby shower” hosted by The Baby Ladies when I went to BlogHer, and an anniversary brunch hosted by Avent. Am I an overachiever, or what?) I learned about the newest bottles and breast pumps and nifty play yards and breastfeeding pillows and and and…

I learned a lot. It was pretty overwhelming, to be honest, even though I’d been through it before.

And then there is a whole other learning curve once the baby actually arrives. You then learn which products your kid will and will not tolerate. For instance, even though Jack was often lulled into a sound slumber with the vibrations of his bouncer, it was not so with Desmond – Dez got completely PISSED if we turned the vibrations on while he was awake. We learned to bounce Dez to sleep and then turn the vibrations on a few seconds after his eyelids closed. Dave got particularly good at it!

Something that Jack and Dez actually have in common is sensitive skin. They are prone to getting pink and rashy and dried out if bathed too often or with the wrong kind of soap or if you rub them the wrong way. Surprisingly, Johnson & Johnson Baby Wash was terrible for Jack, but so was the more natural California Baby. We went through quite a few products looking for a good solution back in the day.

Unfortunately, I don’t remember what we liked best. And half the products we tried aren’t around anymore. And there is no guarantee that Dez would tolerate the same products anyway!

I was excited when Little Twig reached out to me and offered to send their products for us to try out. I received their Calming Lavender Baby Wash, which has lavender and chamomile, so not only does it smell great but it has relaxing properties that make it perfect for a bath before bed. The baby wash is pH-balanced for sensitive skin, and I’ve used it several times now on Dez and his skin stays perfectly baby-soft and clear. Woot!

LTBabyWashI also got a sample of the matching Calming Lavender Baby Lotion, which has the addition of lemon to it and smells absolutely heavenly! It’s a lightweight moisturizer that rubs in well and doesn’t leave the skin feeling oily. I tested it separately from the baby wash to be extra safe and Desmond’s skin was perfectly happy with it.

If you aren’t into lavender, Little Twig offers “Happy Tangerine” scent as well as an unscented, extra-mild line of baby skin care products for those that are even more sensitive than my kids. All of their products boast the following:

  • Safe for the entire family
  • Comprised of the most effective organic and botanical ingredients in a simple recipe for pure and gentle personal care
  • Completely free of phthalates, sulfates, parabens, synthetic fragrances, nuts, soy or wheat
  • pH-balanced and ideal for sensitive skin
  • Pediatrician-tested

If you want to try the Little Twig products out before investing into full size products, they offer travel size packs of their products that would be perfect! There are some adorable gift sets for the new parents in your life, too. There are babies coming every which way this year, it seems!

Does your baby have sensitive skin? Have you tried Little Twig?

Disclosure: I was provided with samples of Little Twig products in order to write this review; however, all opinions are my own. Please see my Disclosures page for more information on my sponsored content.

New Baby, Second Time Around

I saw a post on Facebook recently that said something to the effect of, “Second kid, don’t be bummed you don’t have a baby book. Your parents enjoyed your babyhood more than your older sibling’s.”

I’m finding that to be very true!

I used to be a diehard baby book person. I kind of still am, at least in my head. I spent so much time during this pregnancy getting Desmond’s baby book all set up using Project Life, which is made up of cards that you just fill in with the details. I’ve got ultrasound photos and pictures of my shower and a few other notes in there.

But then…I haven’t filled anything else out in months. I just can’t get motivated to do it – I’m too busy living in the moment.

I am enjoying Desmond’s babyhood a lot more than I enjoyed Jack’s. I don’t doubt myself like I did with Jack. I am not dealing with Postpartum Depression or a flare of PTSD. I’m in a better marriage and we’re in a better financial position.

I cannot express how glad I am that I’ll never have to be a first-time mom again!

This time around, I get to stop and smell the flowers. I sit with Dez in the rocking chair and feel his weight in my arms, his head on my shoulder. I snuggle him close, smelling that baby smell, and kiss his soft, chubby cheek. I sing to him – he can’t tell me yet that I’m no good at it! – and have little chats and encourage him to keep trying to crawl (even while hoping he will slow down just a bit).

In general, there is less rushing about this time around – I know a diaper change doesn’t need to happen RIGHT THIS SECOND and it’s okay if the baby fusses a bit while I use the bathroom.

I know that a poor night of sleep is no indication of what the next night’s sleep will be like, so I can reassure myself that I’ll sleep eventually. I know anything can happen, but I also know chances are that we’ll all get through it just fine. I know the challenges make us smarter and stronger and better.

Desmond is a delightful baby. Jack was a delightful baby, too. The biggest difference in this equation is me! I’ve learned so much from these two amazing boys of mine – so much that I can’t even begin to put into a baby book.

Save the Date with Minted

Note: This post is sponsored by Minted.

End of treatment is approaching for Jack and we have our eyes on the prize. We’re working on planning a few things in honor of this long, hard journey coming to an end, including a party to celebrate! We’ve have a few talks with Jack about it and so far he knows he wants to eat chicken on a skewer, mashed potatoes, and apple pie.

We’re a little food focused in this family.

He has a vision for making monsters that travel around on little motorized wheels, as well. I am not very mechanically inclined, so I’m going to leave that up to David to figure out! (Tag – you’re it, David!)

I get to work on the menu and invitations, mainly because I’m the mom and I didn’t ask for other volunteers.

This might come as a surprise to the other tech-savvy bloggers out there, but I’m a little bit old school and I LOVE paper. When I heard about the new Save the Dates at Minted, I got super excited. I already have some of their Mommy Calling Cards and the quality of the cardstock and printing can’t be beat; I get compliments on them all the time. So I hopped on over to their site to find something just right for Jack’s End of Treatment Party.

The problem is there are too many awesome choices!

Should we go with a British theme (for the Dr. Who lover)?

 LondonSaveTheDate

Or maybe something that showcases the sheer elation we feel to be DONE?

YesSaveTheDate

Or how about something with a photo to show off that handsome face?

PhotoSaveTheDateLuckily I get to play around on the site and personalize the different versions to help me make this decision. I may have to order a few different designs, though…

Disclosure: I received compensation from Minted in exchange for this post, but the content and opinions expressed here are my own. Please see my Disclosures page for more information on my sponsored content.

So Many Appointments

Jack has so many appointments. ALL THE TIME. Chemotherapy is only part of cancer treatment – there are a lot of extras that come along with it. Bonuses, if you will. (Ha!)

This is a snapshot of Jack’s January appointments – minus the things I’ve pushed off into next month, like the one that checks that his spinal fluid pressure isn’t damaging his optic nerve or the echocardiogram to measure organ damage from 3 years of chemo. It also doesn’t include the learning and psychological assessments he’s had at school this month.

January 2 – Ultrasound to check for damage to veins from Broviac catheter (looks good! whew!)

January 9 – Therapy

January 12 – Pediatrician due to dizziness, fatigue, headaches, nausea (inconclusive!)

January 15 – Lab draw (to hopefully explain dizziness, fatigue, headaches, nausea)

January 16 – Breathing treatment

January 20 – Lumbar puncture, oncologist exam, chemotherapy infusion

January 21 – Eye exam

January 22 – Dental cleaning (if his platelets and white blood cell counts are high enough)

January 23 – Therapy

January 27 – ADHD Assessment

As you can see, the longest stretch we’ve gone without making a trip to Kaiser was 7 days. BUT! Add on Desmond’s well-child check (January 5) and that stretch disappears.

I think we might spend more time at Kaiser than at home.

Three Years

Jack was diagnosed with Leukemia three years ago.

It’s been three years since I heard, “This is the best kind of cancer to have.”

Jack - first day of Kindergarten, before cancer.

Jack – first day of Kindergarten, before cancer.

Three years of worrying that he could die from a cold or infection or even just a side effect of treatment.

Three years of worrying what damage the same treatment that would cure him would cause. Heart damage? PTSD? Learning disabilities? More cancer?

He’s had 12 or so lumbar punctures in the last three years.
Plus Four surgeries – two Broviac catheters placed and one removed, and the placement of a PICC line.
Three infections – one likely viral, one due to a rare bacteria, one due to a common bacteria.
Four hospitalizations.
Countless toxic drugs, blood draws, dressing changes, line flushes, doctor appointments…

Jack has lived with monthly “Roid Rage,” as well as daily headaches, stomach aches, fatigue, trouble walking, numbness in his extremities, bone pain, skin sensitivity… His appearance has gone through drastic changes thanks to weight gain, weight loss, and hair loss. He’s dealt with acidosis and pseudotumor cerebri for much of the time. His personality has changed – I no longer describe him as carefree.

He has missed so much school in the last three years – half of kindergarten, at least a third each of first and second grade. We’ve had 504 and IEP meetings – and it’s only now, three years into this, that he is getting the proper assessments.

He has developed food aversions to the things we used to try to administer pills. He won’t touch applesauce or peanut butter anymore. He avoids yogurt and nutella.

It’s been over three years since he’s gone swimming. He will do anything to avoid an extra dressing change!

It’s been grueling for all of us. We are beyond tired, beyond shell shocked. We are different than we used to be. Cancer is a part of our life now. When treatment ends, it won’t go away.

Still, we are looking forward to the end of treatment - March 20, 2015. Maybe we will breathe more easily then.

Three years is too long to hold our breath.

Jack, age 8 - Christmas 2014

Jack, age 8 – Christmas 2014

Ewokmama’s Gift Guide

I love Etsy. And I love Pinterest. And fun things. And shopping for people that aren’t me.

So I decided to make a gift guide. Even though Christmas is next week and it’s unlikely you’ll have time to get most of these things by then. Also, this may be just a list of things I (or people like me) would want. But isn’t that the case with most gift guides?

So here is Ewokmama’s list of things you should buy people! DOOOOOO IT.

1. Personalized Things

Who doesn’t love something personalized? I love personalized things of all kinds.

  • For instance, I am a huge fan of these Christmas stockings at Forshee Designs. They are large and sturdy and won’t stretch out (or down to the ground) when you fill them. The embroidery is beautiful. See how well they coordinate and hang just so?

stockings

  • Mom necklaces! There are so many to choose from. On the pricier side, I love this necklace from Red Envelope with birth stones for each child. You can have the bars engraved with the childrens’ names and birth dates. Configured the way I would want it (with two pendants), it costs $171. (That’s a lot of money to me.)

The more budget-friendly option is this Hand-Stamped Swivel Sterling Silver Bar necklace for $56+ at byHannahDesign. My BFF just gave me this for my birthday! Woot!

Speaking of art…

2. Art

RobinPlemmons

Custom Robin-art on my arm!

3. Tasty Treats mmmmm

AJ-2T

4. Weird Things

Sometimes you need a white elephant gift or you know someone who collects odd things. Think Geek and Fab are both great resources for finding the out of the ordinary.

  • But also – check out this Instant Comfort Pocket Box! It’s a little decorated matchbox that can be carried around waiting for that moment when inspiration or encouragement is needed. Adorable!
  • Sriracha Candy Canes – need I say more? (Okay, I do need to say more: I wouldn’t eat these, but they would be a great gag gift!)

 5. Booze

This one is a no-brainer, right?? Hopefully you know what your recipient likes to drink!

  • I prefer wine, and I buy most of my wine from Naked Wines {<—affiliate link with a deal!), which is like the Kickstarter of the wine industry.
  • You can always do something more interactive like a Homemade Gin Kit or a beer-of-the-month club, too.

So, there ya go. Thanks for letting me self-indulge! Have a great holiday!

P.S. This post is not sponsored. It does contain an affiliate link (clearly labeled). If you want to sponsor a post on my site (please do), contact me!

I Don’t Wanna Grow Up

I still tuck Jack in at night. We usually read two books before bed to help him wind down and then I turn off the lights, lay down with him, and we chat for a few minutes. Last night we had to skip reading books because he hadn’t done his homework at the after-school program. Homework ended up eating up the evening and I tucked him in after 9pm.

He didn’t think he could fall asleep without reading books. He told me that they helped him with his fears. He is so scared and he doesn’t even know why. I think it probably has a lot to do with all of the VERY BIG THINGS he has to handle at such a young age, along with his great imagination. The world can be big and scary when there is no end to your imagination and you know that bad things can happen to good people.

Like cancer to a child.

I looked at him, his eyes wide with fear while he tried to hold back tears. I told him he would be okay, that we would protect him. Nothing could come into our house and get him – he has parents and a big dog to keep watch.

We can’t keep cancer away, though. He knows that. His fear persists.

I studied his face, looking at the nose so like mine and the eyes just like his dad’s. Suddenly he looked so grown up to me, even with the fear and the tears. “You are growing up so fast,” I murmured.

The tears burst from him and he exclaimed in a panic, “I don’t want to be grown up already!”

“Oh, honey, don’t worry! You’re still a kid! You can take all the time you want to grow up! I know you’re still young – you just look big to me, especially next to your little brother. Don’t worry, you’re not grown up.”

That seemed to calm him somewhat.

IMG_4052.JPG

Jack holding his little brother.

Then we talked about getting ready for Christmas – picking out our tree this weekend and maybe watching A Charlie Brown Christmas. He’s never seen it, so I told him about what a dope Charlie Brown is and how he picks the worst, saddest little tree. Jack laughed out loud at that. Ridiculous Charlie Brown!

Then he said, “Maybe he picked that tree because he knew no one else would pick it. He was being nice.”

“I think you’re right,” I told him, and we said goodnight.

Write a Letter to Santa and Help Wish Kids!

Between November 7 – December 24, visit your local Macy’s store or Macy’s Believe online to submit your child’s letter to Santa and help make dreams come true for Make-A-Wish kids around the country. For every letter received through December 24, Macy’s will donate $1 to Make-A-Wish (up to $1,000,000).

Jack LOVES the idea of Santa. In prior years he has written Santa several letters, made him cards, even even built a shrine in his room. At eight years old, it seems that he might be starting to waiver in his devotion and questioning a bit more, but still – he wrote a letter to Santa this year, asking for a haunted house and asking that Santa respond if he got the message. He included his very own “return receipt,” which was a drawing of some toys and dashed lines to indicate where to cut.

LettertoSanta

Santa dutifully responded and Jack was beyond excited. He just knows Santa will come through for him.

David and I set to work looking for a toy haunted house. We didn’t find much, but we didn’t want Jack to feel let down by Santa, especially on the last year he’s likely to believe in him. So we bought a dollhouse and developed a plan to paint it, sand it, and turn it into something haunted. I was also able to find a “monster bucket” on (post-Halloween) sale so that should help us haunt the place up.

This may seem like a lot of effort, but Santa is just one small thing that adds magic to Jack’s life amid all the hardship he endures due to Leukemia. Make-a-Wish helped in this effort this summer, as well, when Jack was granted his wish for a TARDIS bedroom makeover. Jack is still delighted by his room and with the granting of his wish, we saw a happiness in him that we haven’t seen in a long time.

He's in love.

He’s in love.

This holiday season Macy’s is helping to bring magic to more kids with their Believe Campaign by working with the Make-a-Wish Foundation! This year marks the seventh year of Macy’s Believe campaign, which invites believers of all ages to drop off letters to Santa at any Macy’s store by depositing them in special, designated Santa Mail letterboxes. You may also submit your letter online at Macys.com/believe.

For each letter received by December 24th, Macy’s will donate $1 to Make-A-Wish, up to $1 million, to grant the wishes of children (like Jack!) with life-threatening medical conditions. Last year, Make-A-Wish granted the wishes of more than 14,000 children across the United States. A wish is granted every 38 minutes!

Here in the Bay Area, Make-A-Wish is working on granting the wish of 4-year-old Joysse, a girl from San Mateo who was diagnosed with Leukemia. For her one true wish, Joysse asked for a princess party complete with purple and pink decorations, a princess dress with a cape and crown, cake and ice cream and more! She is so excited that she asks her mom, Gabriela, about it every day. Her party is scheduled for January, but as a surprise, Macy’s will be helping her prepare for her wish with a very special celebration at the San Francisco Union Square location.

To help kids like Jack and Joysse this year, make a trip to Macy’s or visit them online to submit your child’s letter to Santa. It’s totally free for you and yet you will get the satisfaction of knowing you’ve helped bring some magic back to the life of a child with a life-threatening illness!

stockings

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