Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.

Thursday, December 18, 2014

Creating and using a Care Notebook for your child with medical needs

Shortly after Cade was born, a friend told me about Care Notebooks.  I'd never heard of them, but a program in Oregon gives them for free to any child with special needs, so I signed up to receive one for Cade. 

Two years later, our Care Notebook goes to every appointment.  So handy!!  For me, it's absolutely 100% worth the time and effort to assemble one. 

1.  What is a Care Notebook? 

Our Care Notebook functions as a personal health record and helps parents coordinate the complex records of their child's care, services and providers.  ~The Swindell Center

Being the parent of a child with special health care needs can feel overwhelming at times.  Your child may need care and services, on a regular basis, from many different types of providers.  This Complete Care Notebook was designed to help you keep track of and organize important information about your child's health and healthcare.  ~Family Voices of Rhode Island

2.  Where can you get a Care Notebook?

Oregon residents can get a fully assembled notebook for free from the Swindell Center.

Alternatively, anyone can easily create their own with a few tools and downloadable forms.  Here's how...

3.  Download forms to build your own Care Notebook

Complete Care Notebook - this one is from Family Voices in Rhode Island.  Fantastic Care Notebook, but at over 129 pages it'll make you wonder if it's all necessary.  It's not...over half is a resource guide that may be useful for you but is mostly relevant in Rhode Island.  I printed pages 1-47 and it was perfect. 

Care Notebook & Organizer - this is the one that I received from the Swindell Center and the one I still use.  It's well-laid out and comes in both English and Spanish.

Care Notebook - another good option, this one is from Washington State Dept of Health.  I use some of the pages from this one because I like the way they're laid out. 

4. Take a shopping trip for office supplies

You'll probably need to buy a few things.  Here's my list, add or subtract as you feel the need (links are for reference):
  • 1" binder - Any 1" binder will work, but consider getting a good quality one.  You'll use it a lot. 
  • Divider tabs - I like the ones with pockets, but buy whatever you like best.  When I build Care Notebooks, I usually just buy the 5-tab sets, but they do make 8-tab sets if you think you'll have that many categories.
  • Binder pockets - if your tabs don't have built-in pockets, you'll probably like having a few pockets
  • Business card pockets - Not only are these great for storing business cards from doctors but I've also discovered that these hold medication refill slips from the pharmacy very nicely. 
  • Some sort of Post-It note pad - great for writing down questions prior to an appointment or taking notes during an appointment.  I keep mine in the very front.
5.  Put it all together.

Put things in the binder in a way that makes sense to you.  If a page or section of the Care Notebook isn't relevant, pull it out and save it in a file somewhere.  Someday you might need it.  When Cade was hospitalized for the first time at 10 months, I was glad to still have the Hospitalizations page.  But you can also always print individual pages off of the website where you downloaded originally.

6.  Pull together all of your information to enter into the Notebook

This is where it gets more tedious.  Filling in all of the blanks takes a lot of time, but it's worth it.  Grab a cup of coffee and settle in.
  • Contact info for all doctors, specialists, and therapists.  If they've seen your child and produced a medical record, get their info. 
  • Medication information.  I've started saving the prescription tear-off tabs at the bottom of our prescription receipts from Walgreens.  They have all the info I need and they fit into a business card pocket. 
  • Appointment information.  I keep a record of all appointments, but if you have a TON of appointments, maybe just keep track of the specialists and well-visits.  Inevitably, someone will ask "When was the last time he saw...." and now you'll know. 
  • Lab tests - if you get a lot of lab results, consider putting them in the binder.  My son has an issue that requires almost monthly blood draws, and I refer back to the results so often that I finally made a tab just for them.  If you only have blood draws a couple of times a year, then this may be a step you can skip.
  • Hospitalizations, surgeries, procedures.  Dates, reasons, which doctor did what, etc.
  • Anything else that you would refer to often. 
  • For my Down syndrome mamas, I also recommend printing out a copy of the AAP health care guidelines for kids with Down syndrome.  The checklist is handy and easy to follow.  I usually print pages 4-6. 
7. Start filling it out and take your time.

It doesn't have to be done all at once.  If your child has a lot of procedures, lengthy hospital stays, etc, then it will probably be overwhelming to think about.  But you don't have to do it today, or even this month.  For now, just focus on getting doctor's contact info.  Then do another step.  Whatever you can handle is better than having nothing! 

Don't be afraid to move around sections of the Care Notebook.  Make it usable for YOU.  A lot of pages of the downloaded Care Notebook forms won't be useful to you.  Some will never be useful, don't worry about it!  These notebooks are general for use with all disabilities, so there will be pages for things like cerebral palsy that you'll most likely never need.

Now that I've given you the nuts & bolts, here are some photos of my Care Notebook and what I personally have in it.  Mine has evolved over 20 months of use and is still changing.  It's a work in progress! 

Some recent additions to my Care Notebook

My tabs:
  • Medical - contact info for doctors, medical record numbers, diagnoses
  • Personal - all about history, In Case of Emergency, etc
  • Appointments - I note the date of each apt, weight & height, Doctor, reason for visit, and any follow-up the doctor requests or notes about the visit
  • Lab Results - Cade needs almost monthly blood draws so I finally gave the labs their own tab
  • Medications - any prescription meds or supplements, the dose, and who prescribed.  This is super handy for new doctors because they can just photocopy the page.  

AAP Guidelines for Health Care - our pediatrician and I go through the list together at every well-visit.  She has it on her computer, but loves that I have it so handy in the binder.

I take my Care Notebook to every major appointment now.  Well-visits and anything with a specialist.  Today it came in super handy.  We had a new specialist we were supposed to see in February.  Instead, they called this morning and wanted to know if we wanted to come right now and fill a cancellation.  When I arrived, they handed me a 4-page New Patient form.  It wanted the name and phone number of Cade's pediatrician, his heights and weights for as many months as we could fill in since birth, and several other things.  Those aren't things I memorize, but I had my Care Notebook and was easily able to fill everything out on the form.  I had this blog post in mind, so I snapped this pic as I sat in the waiting room:

Monday, December 8, 2014

Pizzazz! Sparkle!! A sensory space

Every child benefits from a sensory environment.  Touch, smell, listen, see, and taste.  The more we use our senses, the more our brains develop.  For kids with Down syndrome, this is extra beneficial.  The more experiences I can give Cade, the better his brain will grow.  Last year I had "Caesar's Palace."  This year I created a sensory play corner.

My original idea came from, where else, Pinterest.  I took her ideas and went from there.  With my husband pushing the babies in a cart, I perused our local home improvement store for inspiration.  And walked out with about $30 in random "stuff", along with a large section of beadboard that we had cut in the lumber yard.  I went home and looked critically at the only spare corner in our small house.

Our play corner before I overhauled it.  It was mostly a storage area for our climbing blocks.

In the garage, I laid out my initial supplies.  The beadboard came as a larger piece so I had the lumber yard cut it into 4 pieces for me.  They're about 18" x 30".  A lot of my sensory items were free samples.  I bought an odd assortment of things, too.  Anything he could DO that would capture his attention.

I arranged them on the board and tried to imagine him...sitting, standing, even laying.  What would he feel?  What would he see?

The tape was on the pipe just long enough for the glue to dry.  I always kept safety in mind as I imagined the boards.

Then I glued it all down with Gorilla Glue.  It was reported to be the strongest glue and some of these things I definitely didn't want coming loose.  The chain fits down inside the pipe and is long enough to come out the other end.  The light takes batteries and clicks on and off.  The black square and brown rectangle are for texture...the brown is pretty rough and the black is very smooth.

With some Command picture hanging strips (the velcro-like strips) I hung the mirrors and the first board, along with some trinkety items I thought Cade would like.  I covered the floor with some foam puzzle mats that we had but never used.  Then I took a few of our foam climbing blocks and closed in the room.  And let Cade loose.  Immediately he crawled through the tunnel into his new little corner.

A little free advertising for the Down Syndrome Diagnosis Network

I was gleeful as he explored his new space and instantly started playing with the sensory board.  And so I started looking for more items to fill a second board.  We had space on the wall for two boards, so I wanted to build the second board as soon as possible.  Meanwhile, it turned out that all of our boys liked the new space...

When our OT first visited, she bee-lined for the corner and hopped over the tunnel to check it out.  She raved over what a great space it was, which made me feel good for trying this crazy idea.

I finally finished the second board and our play space is officially complete.


It's a bright, cheerful little spot, no more than 16 square feet.  But it's a stimulating environment to awaken the senses, at least until you play so hard that you fall asleep! 

I still have 2 sections of beadboard, so my next plan is to make 2 "extra" boards, then change them out regularly with the ones currently on the wall.  I really want to incorporate smell and maybe even taste into the new boards.  I have some ideas, so we'll see if they pan out!  Since I use Command strips that are like velcro, as long as all the strips are in the same location on each board, I can do this without any damage to the wall.  I also regularly change out the toys and books inside the corner.  Some days it has rubber blocks, other days musical instruments.  I don't put a lot of thought into it, I just swap them out when I'm picking up clutter.

Thursday, December 4, 2014


Let me preface this post: I have no issues whatsoever with Cade's Down syndrome now.  I embrace him for who he is and I love every single chromosome.  But once upon a time...

When I found out Cade would have Down syndrome, I was alternately relieved and absolutely crushed.  Relieved because I knew he would survive.  I had worried that he might have T13 or T18, both generally fatal at birth, so T21 was a huge relief.  But I was also crushed because very few people actually hope their baby will be born with a disability.  I grieved for us and for him.  Life would be harder, and I didn't know if we were ready for that. 

Before I bury the headline, here's the crux of my blog post...yesterday was our two-year anniversary of receiving the diagnosis. 

I didn't think of it once all day.

Not even once.  It completely slipped my mind until this morning.  And today, I realized that time and experience are healing.  Two years ago today I was crushed, obliterated, wiped out.  I spent a lot of the day crying.  And I didn't spend much of the night sleeping.  It seems silly now, in hindsight, but that was a dark time for me.  Sometimes during the darkest part of the night, I wondered if miscarriage would be easier. 

After a few days, my heart and mind calmed down and I composed a long letter to my family.  It started like this:

It really didn't take too long and I was in a much better frame of mind.  But the heartsick feelings of that day have stuck around some.  Last year at this time I was too overwhelmed with leftover emotion to write any blog posts.  In fact, it set off 6 months of writer's block!  

And this year, I forgot all about it!  What a refreshing feeling.  

Monday, December 1, 2014

What you see isn't true

If you live in our area and you've seen us in the past year or two, then you've likely met Cade.  He's the baby you smile at in a restaurant.  He's the one you make googly eyes at in the grocery store.  He's the one who you talk to in a high sing-songy voice as you tell me he's adorable.  But most likely, the response you've gotten from him is this...

Blank.  Rarely does Cade show a response to anything in public.  He seems vacant.  This is his personality in crowds, in front of new people, anytime he's overwhelmed or tired.  He retreats into himself and...blank.  

I used to make a lot of excuses.  

"He's so tired right now."
"He just woke up from a nap."
"His coffee hasn't kicked in yet."

I used to try to encourage him to wake up.  Can you wave?  Will you say Hi?  

Most of the time now, though, I just say "Yep, he keeps us busy.  Typical toddler."  And I move on.  But really, what I really want you to see is this:

Just readin' the mail

20 months old
Thanksgiving Day

When you see people with special needs and they seem to be "blank" or "not all there", remember this blog post and realize...what you see isn't a true perspective.  I guarantee, there is a person inside and there are smiles and laughter and a life worth living.

“This is not some big distraction. This is not some huge detour. This is the path God has for us and it leads somewhere good. It could even be our defining moment.”