Favorite Fall Things

I realize I’ve written some kind of downer posts lately, so I feel the need to assure you (and myself) that there are a lot of good things going on.  So here are the top eight great things that have happened in the last few months…

8. Pet Event. In September, Clara and I co-led a pet event in our community. She called over 40

animal rescues to ask them to participate.  Eight said yes – a great response for the first time holding such an event. Our partner in this event got several pet vendors to come and share their goods and we filled a section of the park with all things pets! The best part of the day was that several animals got adopted by families who met them at the event, including a puppy who was adopted by one of my colleagues. I was so proud of Clara and the hard work she put into this great cause.

7. Swimming Lessons.  Connor took six sessions of swimming lessons this fall and he really loved it.  His teacher was kind and patient. The goal was to get Connor to blow bubbles and start to learn to float on his back.  We didn’t quite get there, but might do another set of lessons this winter.

6. Birthday. Clara turned 12. Preteen drama has hit our house full on, but she continues to be a delightful girl filled with kindness, dance, emotion and love.

5. Pictures.  I’m a sucker for pictures of my kids.  We found a new photographer in the area and had
her take pics of the kids this fall. They turned out amazing.  So excited to have photographs that capture their cuteness and love for life and each other.

the cutest mice!

4. Halloween. We’re big fans of Halloween in the Dean household.  The kids decided to be Mickey & Minnie Mouse this year and it was adorable. They loved trick or treating even though it was super chilly.

Watching the dolphins

telling us what he sees in the tank

3. The Aquarium. On a random day off from school this fall, I took the kids to the Shedd Aquarium. Both kids LOVE going to the aquarium. We always have a good time exploring the exhibits, seeing the show and learning more about undersea life. A highlight this trip was Connor using his talker to tell us about what we were seeing.  Clara and I both got teary at how willing and wonderful he was being with his words.  I think our favorite part was find a table by the dolphins and eating our sack lunches watching them swim and play.

At the museum

2. Thanksgiving.  We had an awesome Thanksgiving break.  It was a much needed rest after a busy November.  My sister and her boyfriend came to visit and we went to the Museum of Science and Industry.

Easter Seals Photo Exhibit reveal

1. Easter Seals Photo Exhibit.  Each year Easter Seals partners with a local college’s photography

class to do a photo exhibit featuring a few kids from their programs.  Connor was selected to be one of the kids for 2017. We didn’t see any of the pictures until the big reveal event. The picture is perfect. It captures his joy, his cuteness, his uniqueness.  We are so thankful for Easter Seals, the services they provide and the way they encourage families.

The Party

On October 26, Connor turned 6! I decided to throw him a little friend party here at the house.  Nothing super involved – just play time and food with friends from day care and kindergarten.  

We invited six or seven kids and only one RSVPed (no) by the date I put on the adorable invitations.

Y’all – I was crushed. No one was coming to my little guy’s first party. I tried not to take it personally – maybe it was a busy weekend?  I tried not to think it was because he is different than most kids – maybe they lost the invitations? But those thoughts kept creeping into my head.

Making pictures with Connor's undersea stamps

Then the next night, a mom texted me that her son could come! Yes! The party was ON!  I replied that was great and warned her he’d be the only one at the party.  The party morning came, and the little friend showed up.  He and Connor started playing and then the doorbell rang – another (unexpected) friend!  Then about an hour in, the little girl whose mom said she couldn’t make it came.  By the time we were cleaning up the stamping fun and getting ready to eat muffins there were enough kids to constitute a party!

Mid-way through the muffins Connor melted down.  He was ready for the party to be done.  Predictably, the other kids were not ready for the party to be done, so they went back to the play room.  We tried to make Connor rally.  We even took a little break – all the kids piled on his bed and we read a book – but the birthday boy was done.  I apologized to the kids and the moms and let Connor go back to his room and take a nap.  The others seemed un-phased and stayed another 45 minutes playing with all of Connor’s and Clara’s toys.

So while it was certainly not a picturesque first birthday party, I’m going to consider it a success.  More people came than we thought would show up and there was art, playing, food and napping involved.  Pretty much the definition of a good time, right? :)

Our six year old!

Field Trip to Hell

In early October, Connor’s teacher asked me to go on their field trip to a farm with them. I was able to do some rearranging at work and said yes even though I just had this feeling in the bottom of my stomach about it. 

A few days later the teacher emailed saying that she had ordered a wheelchair lift bus that because lift buses don’t seat as many people now they would have to get a second bus and that wasn’t budgeted. What I should have done was expressed empathy for her situation and then waited for them to figure it out.  Instead what I did was wait a couple of days and then offer to drive Connor separately. So that morning after everyone was ready to go, all 50-some kindergarteners headed to the bus while I headed to the CR-V with my kindergartener.  And so the field trip began.

Trying out the tractors on the playground

We got to the farm and the first thing they did was go to this massive playground.  It was a cool playground but it was built on grass with no walking paths. Not wanting Connor to be left out again I

spent the next 45 minutes pushing his wheelchair through grass and heaving him on and off the various elements he could “play” on.  He wasn’t so thrilled with most of it and by the time playtime was over we were both a sweaty mess.

After a quick lunch break we went back outside only to realize it had become unseasonably warm. I had dressed Connor and myself in pants as it was fall, but that was a mistake. The kids walked around looking at some animals which Connor really enjoyed and then went to produce packing section to watch them wash zucchini.  While it was a little rough pushing along rocked pathways, it was probably the most enjoyable part of the field trip.

Our next activity was a hayride to a pumpkin patch. There was no plan for Connor’s wheelchair, but luckily the dad on the trip helped me load it up the ladder staircase.  The ride was very bumpy and Connor started to cry.  Soon we got to the pumpkin patch and it was literally a dirt field with pumpkins growing in it.  I think in the back on my mind this whole time I just kept thinking, "They wouldn't really just take us to a field without telling me or making some kind of arrangements for Connor." Ha.

We maneuvered the wheelchair down to the field and put Connor in it. I looked ahead of me at all the clumps of dirt and vines.  How the hell were we going to go pick a pumpkin?  The other kindergarteners scattered – gleefully bounding through the field to find the perfect pumpkin.  Connor was on the verge of tears again and I wasn’t far behind.  I think his aide saw we were both at our breaking points because she offered to show him two pumpkins nearby the we could pick. I managed to push him a few feet but then just picked him up and carried him to the pumpkins she had found.  He didn’t care and made a half attempt to choose between the two.  We broke the pumpkin off the plant and headed back to the wagon.  Once we were all aboard, the tractor started back up and Connor lost his mind and started screaming and crying. The other kids were sweet and worried about him and I assured them he was just tired and overwhelmed, not hurt.  I sang songs quietly in his ear and reassured him this field trip to hell was almost over.

I’m not sure what the last part of the field trip involved.  Connor was still crying as we unloaded him and the wheelchair from the wagon. I looked at his teacher and said we were leaving.  I could tell she felt horrible that the day had been so tough. She hugged me and thanked me for coming.  By some miracle, I got out of the farm complex before bursting into tears.  We must have been a sight.  Both of us sobbing as we wheeled through the parking lot (which, of course, was not paved). 

We got to the car and blasted the air conditioning.  I sat there for a minute hating the world. Hating that the field trip was to a farm, hating that my son couldn’t have fun on his first field trip, hating that it was like 85 degrees in October. Hating the things that are hard for my family that most families don’t think twice about (and I know they don’t because we were one of those families until six years ago).

After I cooled down mentally and physically and Connor stopped crying, it was time for a big breath and the reality that it was time to move on with the day.  I had a meeting at work later that afternoon and Connor was expected at Kinder Care.  Not a day to quit trying. 

I struggle with what’s fair for me to expect in these situations. Is it fair for me to expect that the kindergarten field trip be someplace accessible?  Is it fair for me to expect others to think through activities and make sure Connor can participate? Is it fair for me to say no the next time they ask me to go on the field trip? I imagine I will wrestle with these and a hundred more questions through Connor’s elementary school career.  

But this I do know – we are done with farms for a while.

Sad Milestone

This past summer Connor hit another milestone – he no longer fits in the seat of the grocery cart. There is plenty to celebrate with this milestone.  He’s a growing boy and while still slender for his age, he is almost six. For part of his early life he had a hard time gaining weight and doctors were starting to murmur about diagnosing him as “failure to thrive”. Not wanting that label to follow him for his growing up years, we added more Pediasure to his diet and pushed through impossible feedings until he learned to chew and enjoy food. Now he often eats more than Clara at a meal. Connor’s also come to the point in finding his voice that he has no trouble telling us where he’d rather sit.  He almost always prefers his wheelchair to a stroller or cart.

April 2013 - At 18 months, Connor is finally able to
sit in the front of a cart.  A happy day!!

So while I celebrated this milestone, it also marked the end of something.  I can no longer go shopping alone with my son. I have tried.  I was a spectacle trying to push his wheelchair and pull the cart behind me.  We bobbed and weaved our way through the store.  People gave me sympathetic looks and tried to get out of the way. Connor showed a small interest in pushing the cart so we tried that for about one aisle until I realized it was too absurd and slow to continue. By the end of our shopping trip I was frazzled.

 It’s been at least two months since I realized he doesn’t fit in the cart and still whenever I think about it I get so sad.  Like really sad. I hate that this freedom has been taken away from us. I hate that I can’t have that one on one time with him. Connor likes going to the grocery store and now we can’t do that when it’s just the two of us.  I hate that I have to schedule my shopping around not being alone with my son.

Little guy loves going shopping with mama

Since Connor’s diagnosis at six months old, Brent and I said we were going to try to have as normal of a life as possible.  For Connor, for Clara, for us.  And honestly, it usually feels fairly normal.  We still do a lot of the things we’d do if Connor didn’t have Joubert Syndrome.  We go out to eat, even though he usually cries or screams during meals.  We travel, even though it’s much harder with a child who is non-mobile.  We go to the park, play board games, adopt puppies and both parents work full time out of the house. 

And now there’s this one, really normal thing I can’t do with Connor and it drives me crazy and breaks my heart. I just hate that Joubert Syndrome limits Connor and limits us.

But we forge on.  A little sad, a little inconvenienced. I try to remember that Clara is the best grocery shopping partner a parent could ask for and now she just has to come with us all of the time instead of most of the time.  Or I go alone.  Which is ok, too.  Or our local Target has a Caroline’s Cart which is super awesome and helpful, so we can get some groceries there.

The little things matter. Both the little moments of joy and the little moments of despair. I think it’s only fair to share our struggles along with the victories. 

Summer 2017

Connor made a new friend at
the JS Conference

The Dean family had a very busy summer!  Here are some highlights from Connor’s world…

We attended our third Joubert Syndrome Foundation Conference. Families, doctors and researcher from around the world came together for four days of networking, support and learning. It’s always an emotional and draining time for me. We meet other families, see the wide spectrum of Joubert Syndrome and hear their stories. We go to lectures and try to understand the complexity of the human body. We attend workshops and parent groups in hopes of learning about a new idea or form of therapy that would give Connor the best chance at making progress.  But it’s also a life giving time. No words can describe how it feels to be with a group of people who “get you” in ways that other friends and family just can’t.

Less than thrilled with the Spio suit

Connor has added a Spio suit to the line up of contraptions we make him wear. The hope is that the suit will provide enough pressure and feedback especially in his trunk and shoulders to make him sit up straighter and work those muscles harder. Luckily, his therapists have said he can wait until cooler weather to start wearing it!

Trying out the new talker

The long awaited and worked for augmentative communication device has arrived! We're thankful for medical insurance that covered a good chunk of the cost, but WOW - definitely an expensive piece of medical equipment that most mistake for an iPad. We are still customizing it, but we are hoping Connor will use his “talker” to share with the world what a smart, funny and kind boy he is. We also got a wheelchair mount for it so it will be more portable and he can use it in a wider variety of settings.

With sissy on the first day of Kindergarten!

On August 16^th Connor started Kindergarten!  He was excited and showed no fear or anxiety. We decided to mainstream him at our local school. The teacher, new aide, therapists and other school staff are appropriately overwhelmed with him.  There is a lot to learn and adapt when Connor enters the scene.  So while we are still trying to figure some things out, I’m confident their hearts are in the right place.

Showing off his lost tooth

And finally, another rite of passage – Connor lost his first tooth!  He keeps sticking his tongue in the hole and thinks it is quite funny we only count up to nine now when we floss his bottom teeth.  The new one is already growing in and a neighboring tooth is loose. 

More soon! Thanks for your continued love and prayers.

Transition

One of his Kindercare teachers helping him
marble paint.

The last six weeks have been marked by transition. The biggest transition being that Brent finally found employment in Illinois (yay!) which means he is no longer a stay at home dad and the kids are back to day care when they aren’t in school.  

When we first bought the house in Bartlett, I looked at several day cares in the area and again were turned away from two because of Connor’s needs (much like our previous experience). Then I found a Kinder Care facility that not only was willing to take Connor, but was excited to welcome him. As luck would have it, when I called almost 18 months after our first visit, they still had room in their Pre-K room and had recently started a School Age program that had space for Clara. It was meant to be! Connor’s teachers are so great. They include him in the activities and go above and beyond every day with feeding, diapering, extra attention and patience. We are so thankful.

Doing a project during the bug unit

 The transition to our new reality has been very tough for Connor.  He has been sick with a cold and an ear infection for weeks and is so tired because of the new schedule and being sick that he isn’t focusing as well at school. Then a week or so ago we found out he is allergic to the amoxicillin he was taking for the ear infection which meant a trip to Urgent Care. I thought the first couple weeks would be rough – I wasn’t prepared for a month and a half of him being crabby, tired and just not himself. He’s finally starting to feel better and I’m hopeful that will help with an attitude and energy adjustment.

When Brent started back at work, we had to stop our extra therapies at Easter Seals. While I really want Connor to continue making progress, we just couldn’t figure out the scheduling to make it work. We’re hopeful to transition back to at least two of the therapies soon.

Another transition has started – Connor is registered for Kindergarten! He is being mainstreamed at our neighborhood elementary school. Clara will be a sixth grader at the same school. So while we are excited for the kids to be at school together, we’re also worried about a full day program with 28 other kids in the classroom. We shall see.

Lil buddy and I on my birthday

We still haven’t ordered his augmentative communication device.  We’ve been trialing, testing and thinking about this since the beginning of November.  I am SUPER annoyed it’s taking this long. I wanted to have the device ordered by the end of January, now I’m hoping for the end of May.

One final thing for today – I’m hosting a LuLaRoe fundraiser for the Joubert Syndrome & Related Disorders Foundation Friday, May 12 – Saturday, May 13.. If you’d like to join us, make a request through this link.

More again soon, but for now prayer requests for health, a productive end to the school year and that our insurance company approves the communication device without hassle or delay.

Communication is Key

This fall we have focused much of our energy at home, at school and at therapies on finding the most effective device for Connor to use to communicate. We added yet another speech pathologist to the mix – this one at a local hospital who specializes in matching kids with augmentative communication devices. After a couple of appointments trying out different machines with varying degrees of success, we chose one to borrow for five weeks. We took the device home and made some edits to the language program to personalize it for Connor. It was amazing how quickly he learned to use it! In less than a week, he was navigating multiple screens (albeit slowly, but he was doing it!), engaging in question and answer conversation and even telling jokes!

He took it to school and had success there, too. His teacher said having a communication device increased his interaction with his peers quite noticeably. We even got our first “bad” report on Connor from school – evidently all he wanted to do was tell his jokes, not participate in the activities the class was doing. Who would have guessed that kind of report would bring such joy!  Connor had started to find a voice of his own and it was so exciting.

The trial period for that device is over and we are close to deciding which one we will purchase. We are experimenting with alternative access method devices now including one that he activates using eye gaze. The device can tell where he is looking and will say whatever word or phrase he is looking at.  Insurance usually only covers one device every five years so this feels like a huge decision. There are pros and cons to several models, but we need to make a choice soon so we can order it and have it before school is out.

Singing and reading with the preschoolers

In other news…

Connor turned five in October! We celebrated by visiting his preschool to read stories, sing songs and Clara did some of her magic tricks to the amazement of all the kids.

He was Thomas the Tank Engine for Halloween. Brent made a phenomenal costume and Connor loved trick-or-treating.

Thomas the Tank Engine!

We’ve replaced his stander with one that is almost too big for him, but should last us several years.  He really enjoys standing and watching Thomas the Tank Engine or Paw Patrol for a bit every day.

This fall Connor had his first playdate!  A little boy we met at Easter Seals invited him over for playing and a snack.

Using the loaner communication device with
his new hand splint and ring.

Connor’s sporting two new devices on hands. One is a cloth splint he wears on both hands and the other is a little ring like thing he wears on his two index fingers to help him learn how to point. 

We learned at a recent IEP meeting that Connor will be going to our neighborhood school for kindergarten, mostly likely in a general education classroom. Clara is SO HAPPY her little brother will be at her school next year.

We are so thankful for a full fall and are praying that 2017 is filled with more milestones and memories.