Summer & Fall 2020: School, Surgery, Seizures and Sunshine

 

Ufff. It’s been a while. Mostly because, like the rest of you, we have been trying to keep our heads above water during this pandemic. But, like most seasons in our family, it has not been boring...

* Because Connor is considered high risk and just to be good humans, we have mostly been quarantining since March 14. With no family or close friends nearby, we’ve been experiencing the isolation that I know so many are facing. Life with a child who has intense special needs can be isolating in and of itself. The pandemic has only multiplied those realities.

Bike riding at one of our favorite
local parks

In August, we let one of Clara’s more responsible friends into our “bubble” and that has been so good for her. Because Connor won’t wear a mask, his close contact with others has been limited to doctors and the occasional therapist. One day, after struggling to practice mask wearing, I just looked at him and semi-shouted, “Don’t you miss going to Target, buddy?!” Unfortunately, his sensory issues have won out over his love of shopping (although this week we had a break through and he kept it on for several minutes finally!).

This fall we have done a couple of outdoor, masked hangouts with friends and colleagues which has been so life giving. Mostly our weeks have been filled with soaking in the sunshine and exploring the many forest preserves in Chicagoland and partaking in a few fall outdoor activities. If I’m being honest, my deepest dread right now is the impending winter here and that the weather will force us indoors for the weeks and months to come.

* Both kids have been 100% distance learning since the middle of March. Clara misses her friends, but is independent in her studies and doing very well. This spring and summer, she took on extra responsibilities with Connor and his learning to help us out. I’m not sure what we would have done without her!

Connor's first day of 3rd grade

Connor has been doing so-so with distance learning. I think he misses the interaction with adults and kids at school but can mostly pay attention during his Zoom time. The hardest thing is that Connor is not an independent learner, so one of us needs to be sitting with him almost all the time.

Next week, Connor goes back to in person learning two days a week. In some ways it was a difficult decision to send him back and in other ways, a no brainer. Our district is being super careful and just bringing back special education kids and then preschool through second grade in the weeks to come. I think this arrangement will be much better for Connor and his learning and frankly, our sanity.

* At the beginning of April, when it was evident that we were going to be doing this at home quarantine thing for a while, we decided to go all in with potty training Connor. Knowing he likely wouldn’t tell us when he had to go, we went the “habitual” route – meaning he sat on the potty every 30 minutes. It felt like all we were doing was going to the bathroom, putting him on the toilet and washing hands. For weeks. We gave ourselves a little grace and pushed the schedule to every 45 minutes. About once a week, Connor would go on the toilet, boosting our hopes that this was really going to happen. Accidents were rare and he became an ace at holding everything in until it was rest time or bedtime. 

And here we are, six months later in about the same place. He’s in big boy undies all day except for rest time and sleeping. He has not had an accident in weeks. He also doesn’t go potty in the toilet. I’m not sure what’s next in this adventure. We’re consulting with experts and doctors to see what the healthiest and most developmentally appropriate next step is. 

Oh – and we don’t put him on the potty every 45 minutes anymore. Our backs revolted and there is now more time in-between visits.

Practicing mask wearing. You can
see his left eyelid is quite droopy
when he isn't actively hoisting it up

* Connor was scheduled to have eyelid surgery for his ptosis on September 24, but a week before he started having seizures. He had one three days in a row. After consulting with his neurologist, other doctors and therapists, we canceled his surgery and added an anti-seizure medication to his lineup. We go to the hospital for an EEG and neurology follow up on October 19. Seizures are scary stuff and it’s even more worrisome because Connor can’t tell us how he’s feeling before, during or after. The seizure medication also isn’t the most ideal because it can cause increased irritability, something we have struggled with for years. Seizures can be a part of Joubert Syndrome. We had hoped we escaped this part of the syndrome, but evidently not.

* While at home, we’ve continued with all of Connor’s therapies. He’s doing great pedaling his bike in short bursts and we have a new walker on loan from Easter Seals that he isn’t protesting 100% any more. He is making more sentences on his talker and learning to describe things in more detail. Fine motor skills continue to be a struggle, but we’ve found several new games and activities on his school Chromebook that help strengthen those skills.

Please keep this upcoming neurology appointment and Connor’s return to school in your prayers. Know that we are thankful for all your love!

Bonus picture! On one of our many walks this summer

 

Catching up - Spring 2020

Well, friends. I made no promises as to the frequency of posts when I started this blog and now it’s been ten months since my last post. I know many of you are curious about Connor’s progress and enjoy these updates, so I will try to post more often.

August 2019 - First day of second and eighth grade

We, like most of you, are living into this new reality of a stay at home order in Illinois. We are faring mostly ok. Clara is babysitting Connor each day while Brent and I work (from home) and is doing a great job with managing most of his distance learning and hers. Connor thinks it’s fun to video call with his teachers and therapists. He is less enthused about doing the assigned work for each day.

Some bullets to share other happenings in the life of Connor the last few months…

*Connor started second grade in August and turned 8 years old in October!

*While he is still having fainting spells periodically, we have been released from the care of the endocrinologist (blood sugar doctor) as they don’t think his episodes are related to blood sugar issues.

Connor's new bike from Easter Seals

*In September, Connor received a special bike from Easter Seals. He’s been using it at school over the winter months, but we are hoping to get it back and start using it outside once the weather warms up.

     *Sadly, Connor has been hit with two stomach bugs and Influenza B this fall and winter. We hope he has better luck with staying healthy in the coming months.

*Connor continues to see three therapists a week at Easter Seals in addition to the therapy he receives at school. I wish I could say he’s making amazing progress each week. It’s slow and steady for sure, but we hold on to hope that all the things we are making him do and learn will one day pay off.

Feeling the princess love

      *Thanks to a work conference I had in Anaheim, the whole family was able to enjoy a few days at Disneyland and the beach. Connor loved the princesses the most at Disney and, even though the water was quite chilly, really enjoyed splashing in the waves.

     *We were supposed to see a surgeon last week for a consult on an eye surgery. That appointment was cancelled, so we are playing the waiting game to see if/when Connor will need another surgery on his left eye.

We are praying for our friends and family that you stay sane and safe during this difficult time. Find joy in the little things!

New Arrival!

We have a new addition to the family. Our accessible minivan is here! It is a full power, side entry Toyota Sienna. Connor’s wheelchair rolls right up the ramp and there are four hooks that we attach to the chair.  A minivan “jump seat” will be installed in the middle row next month so Clara doesn’t have to sit all the way in the back.

Connor loves riding in the minivan and enjoys telling people that we have one. “Minivan” might be his new favorite button on his talker.

All of this is thanks to you, our fabulous community. In all, the van and alterations totaled about $67,000. Your donations made this possible for our family. Thank you doesn't feel like a big enough phrase for how grateful we are. We're humbled and overwhelmed by your generosity and love. 

Fall and Winter Update

A general update for you from this fall and winter...

With the birthday boy at Big Bowl

Connor turned 7 in October! We celebrated in a few different ways. Connor chose to go to Big Bowl for his birthday dinner. Gramma was in town and that’s always fun. He and his friend, Alyssa, went swimming at the pool and then she came over for cake and ice cream.  He was very cute opening her gift and I’m so glad he could have a little “party” with one of his friends.

We have continued to see a pediatric endocrinologist after Connor’s hospitalization this fall. They ran more tests, took more blood and then at the end of November the doctor released Connor from his care.  He thought it was just a freak thing caused by the cold virus. Unfortunately another episode (this time very low blood sugar), took us back to the ER right before Christmas and back into the care of now two endocrinologist.

7 years old!

Connor is continuing to go to ABA therapy each afternoon. We haven’t seen much improvement in the last several months and I’m starting to wonder if it’s still worth it.  He’s so tired from his four hours at school that by the time he gets to ABA, he really doesn’t have much left in his tank. They would like for us to do two full days at ABA and then three days at school, but we can’t swing that with the bus schedule and transportation needs.

For over two years, Connor’s physical therapist at Easter Seals has been working with him an adaptive bike. This fall, Connor has finally figured out how to get all his little muscles firing and move the bike on his own. He chooses not to do it every time he’s on the bike, but several times now he has pedaled down the hallway by himself. Progress!

Loves taking selfies with sissy

We are beyond grateful for the response to the GoFundMe my sister and my friend set up. Brent and I have both cried several times – simply overwhelmed by the love and support from our community near and far. Thank you.

Current requests for prayers and good vibes include less tantrums at breakfast and fewer refusals at school. 

Desperate Desires

Clara desperately desires Connor to love the things most kids love. 

When we were decorating the Christmas tree this week, I could see her body and mind willing him to enjoy the process and festive atmosphere.  Instead, he threw a tantrum when we tried to stand him up next to the tree to help hang an ornament. At Thanksgiving we decorated a gingerbread house. Clara so wanted Connor to participate and join in the fun. She kept asking him what kind of candy to use next or where to put decorations on the house. He kept saying “go bedroom” on his talker, more interested in taking a rest than in her festive activity. She was very excited to include him in her bowling birthday party. She talked to him about it for days leading up.  She said her friends were excited to meet him (likely because she talks about him at school a lot).  He had enjoyed bowling a year ago when we went as a family, so we were hopeful he would find it cool to bowl with a bunch of tween girls. Instead, he threw a fit when it was his turn to bowl and then screamed and cried when her friends sang Happy Birthday. It was Brent’s birthday on Monday and Clara poured attention and love on him. She kept encouraging Connor to say Happy Birthday on his talker or give Brent a kiss or hug. He mostly just stared at her or off into space.

This is the story of her life. Of our life. Connor just doesn't enjoy or can't enjoy the things that most seven year olds do.

These scenes break my heart. And then they fill it back up again. You see, even when Connor “ruins” tree decorating or disrupts her birthday celebration, she is usually the first to comfort him or redirect his attention or try to laugh it off. She will go and smoosh his little face with a kiss. Or she’ll grab him and spin him around. Or she'll start dancing around and singing a funny song. Her love for him is endless and unconditional.

For seven years, I’ve been dreading the day their relationship changes.  When Clara has tragically grown out this mad love for him or when he stops giggling at her every move or when her tolerance for all the ways he makes our lives out of the ordinary has faded. But I’m now starting to think this IS their relationship.  That she will always smother him with hugs, always take pride in the idea (ok, the fact) that she is his favorite person, always have that gleam in her eye when she looks at me and says, “Mom, isn’t he just so adorable?”

She is the perfect example for me on how you can both desperately desire that something be different and be content and joyful in the reality of the present. I thank God for her in our life. She makes me a better mom and a better person in so many ways. 

19,001

As I mentioned in an earlier blog, in August we started the process of finding an accessible minivan for our family. We’ve talked to MobilityWorks (the main supplier of such vehicles), friends who use accessible vehicles and local dealerships.   What we learned is that there a million different options and it’s going to be expensive pretty much no matter what. The gently used 2016 van that we had our eye on was about $50,000. Alterations to a van that’s already owned are about $30,000. Brent said, “I never thought I would spend that much on a vehicle, but if I did, I didn’t think it would be a minivan.” Haha!

I started researching grants right away. I found several endowment type groups that offer small grants. Some we qualify for and some we don’t. I received information about a program through the state of Illinois that offers $15,000 grants for capital improvements to your house or car. PERFECT! I got on the phone with the agency and the very nice woman explained how it all worked. She told me she would send me the paperwork to fill out and once I submitted it, we would be put on the waitlist. This didn’t surprise me, but I asked her how long the wait would be. She said she had no way of knowing.  I asked how many people were on the wait list.  She paused and then said, “Well…the last I heard this summer there were 19,000 people on the list.” I busted out laughing on the phone.  “And how many grants do they give out a year?” I asked. She replied, “Oh…between 500 and 1000.” I started laughing again.  So great, by the time Connor is my age we will have made our way to the top of the list.

When I got done laughing about how absurd this whole thing was, I started to feel a little discouraged.  Even though Brent and I are both employed, and we live a comfortable, middle income life, there was no way we could afford this van. I was talking to my sister and a friend about it and they convinced me to let them start a GoFundMe for our family. I’m not going to lie – it feels really weird. Our house didn’t burn down, no one has had a tragic accident. We are just living our life – as abnormal as it is – and I had a hard time saying yes to accepting help. But Emily and Kiaja reminded me that we have this big, wide community that loves us, supports us and prays for us on this journey.  You have since the very beginning and they knew you would show up again.

We are so thankful for that. For the ways you show up through prayer, text messages, comments on this GoFundMe.

Facebook, conversations when we are in the same room and now through

I’m hopeful that we will have this van by the springtime with your help, even if we are 19,001 on the grant’s wait list.

Thank you!!

Labor Day Scare

Labor Day weekend brought us a scare. 

At the ER

On Sunday morning, Connor had a hard time waking up and his lips were white. He was with it enough to sit up and indicated that he was hungry and thirsty. He was able to drink and eat, but still wasn’t himself so we headed off to urgent care. They did a number of tests there include taking his blood sugar which came back at 350. It shouldn’t have been over 180. 

Even thought Connor was much more himself about half way through our time there, they sent us to a nearby pediatric ER The ER drew blood and took a urine sample.  The blood draw is often a bit more accurate for sugars than a finger prick. This time the number was 474. 

As Connor sat on the bed, happily watching Thomas the Tank Engine, the ER doc shared the results with me and said Connor most likely had diabetes.  They were admitting him and a specialist would be up to visit us soon to go through all the protocols that would now be a part of our life.  I broke down in tears and she left the room.  I just couldn’t imagine adding one more hard thing to our life. Connor reached for me when he saw me crying. I love this little boy so much and hate all the crap he has to go through. I hated the idea of having to prick his little finger six or more times a day and then injecting medicine into him just so his body would do what it was supposed to know how to do.

Getting settled in the hospital room

After several minutes of my brain swirling out of control, the doctor came back with a puzzled look on her face. She said more bloodwork came back and his hemoglobin (A1C) was completely normal. Usually that is the defining mark of diabetes and without elevated levels there it was very unlikely he had the disease.  Relief rushed through my body. This meant, however, that they didn’t know what was causing Connor’s dangerously high blood sugar levels. We were admitted to the hospital and eagerly waited for the doctor to come and share more. This new pediatric doctor was also a little puzzled, but said that she had seen a few times before in her career when a cold virus (like the one Connor had been battling for 10 days) could cause high blood sugar levels. They wanted to keep Connor for 24 hours for monitoring and more tests.

Loving the entertainment

The next few hours included book reading, Disney Jr watching, finger pricks, Sissy performing dance numbers, taking vitals and eating pancakes. Brent and Clara headed home and Connor and I settled in for the night.  He was such a trooper.  Every two hours, the nurse would come in for one test or another.  Several times during the night, the IV alarm would go off because Connor would have tossed and turned enough to kink the tube. It was a hard night.

In the morning, his blood sugar was low (50) and so we got food into him as quickly as possible. The doctor came later that morning and while they were still stumped over what caused the elevation in blood sugars, they were sending Connor home. We were glad our hospital stay was only for a night. I thought about all the other special needs families we know who spends days, weeks even in hospitals each year. I’m not sure where they find the strength for that kind of life. One night was more than enough for us.

Smiling because he gets to go home and
showing his bandaid

We followed up with a pediatric endocrinologist after the hospital stay and he basically said the same thing – didn’t seem like diabetes, hopefully it was just the virus. Once Connor gets over his cold, probably in early October, we have to go in for a three hour glucose test and that will give him a fuller picture of the issues at hand.

Specific prayer or good vibes requests for the glucose test to show nothing alarming.

Summer 2018 updates

Goodness. It’s been a while. Not for lack of things to share, but more about the craziness of my job the last few months and the hustle and bustle of life as the Beck Dean family.

So here’s the shortest version possible of the last few months…

This winter, Connor was diagnosed with Autism Spectrum Disorder. I took him to our amazing physiatrist, who is also a development pediatrician, to see if he would qualify for the diagnosis because we desperately needed behavior therapy. Without having to stretch the truth at all, she confidently diagnosed him with ASD. This new diagnosis does bring some clarity to some of the quirks Connor exhibits.

His new diagnosis kicked off a five month process to find a behavior therapy place that would take our insurance, could work with Connor and would be flexible with treatments. Usually behavior therapy happens for 20+ hours a week and with both of us working and wanting to keep Connor in kindergarten, it would tough.  We finally found a place and in May they started seeing Connor a few hours a week at day care.

Getting so much better at using his talker!

Once school ended, we decided to have Connor do center based therapy with them three full days a week. This decision was tough for a few reasons, one of which was certainly the cost.  With insurance paying 80%, we were still looking at $500 a week. I share not to gain sympathy or solicit help, but rather as a glimpse into some of the realities that families with special needs kids face. This cost is on top of three 45 minute therapy sessions at Easter Seals and almost weekly doctor appointments with one specialist or another. Because of the high costs throughout the year, we will likely not pay $500 a week for the whole summer as we will have met our family out of pocket cost of nearly $8,000. $8,000+ on medical expenses in the first seven months of the year. It’s hard to say that and not get a little queasy in the stomach or think of all the things we could be doing with that money instead. But it’s also our family norm. Since Connor was born, we have rearranged our middle income salaries to accommodate our little guy and his many needs. We're thankful we have the funds to provide Connor the care he needs even if that means we cut back on our "wants" a little. That’s what you do as parents, right? Make it work.

And the reworking of needs and wants are usually worth it. Over the summer, we saw some remarkable growth in Connor because of this new therapy center. Most markedly, he started using his talker more. He joined in conversations, strung words together for phrases and sentences, he argued with me when he didn’t get what he wanted. :) The therapy center is also helping us work through behavior issues we are still having at home around eating. I’m hopeful we will see improvements in the next couple of months.

Connor loves swimming and playing in the water.
He'd go to the pool every day if we could!

A hard choice lay before us as the start of the school year approached. Would Connor start first grade at our neighborhood school or would he go full time at this therapy center? I didn’t want to pull him from school, but I also didn’t want to lose any ground we had gained with therapy.  Luckily both the school and the center agreed to a joint program. Connor goes to first grade for 4.5 hours and then to therapy for 3.5-4 hours. He’s a part of the special ed classroom and a general ed classroom at school and that seems to be working out beautifully.  He is getting the special attention he needs, but is also being challenged academically.

 Right before the start of the school year, Connor got his new wheelchair. It is pretty much like his old one which was a hand-me-down from a great charity organization in Chicagoland.

First day of school!

On August 15, Connor started first grade and Clara started seventh grade! Both love their teachers and are enjoying being back with peers. Connor loves riding the bus and Clara has joined a service club at the middle school.

In August, Brent and I started seriously talking about and researching accessible mini vans. Both of our vehicles are 11 years old and we want to make a new vehicle purchase when we want to and not feel rushed into a decision because one of the cars died. It’s also becoming increasingly difficult to heavy-ho Connor and his wheelchair into our cars. A gently used accessible van is around $50,000 so I have begun to investigate different grants that we can apply for. I hope to do more of that in the weeks to come and have success in applying!

Loves it when sissy takes his picture
with filters

More soon. Prayer and good vibe requests for Connor to continue to make progress at therapy and for grant applications to be approved for an accessible vehicle.

 

Sissy Saves the Day

Connor was invited to a friend’s birthday party for the first time recently.  A little boy from his kindergarten class invited him and although we were skeptical he would enjoy it (it was at one of those bounce house places), we RSVPed yes.  Who knows when the next invitation would come?

Brent agreed to take him to the party so I could take Clara and make good on a promise from her birthday. It was about 15 minutes into the party when the first text came through: “This is going to be a disaster.”

I asked if we should come over thinking Clara could maybe get him to enjoy the party a bit more.  Brent said yes, so Clara and I ditched her plans and headed over to the bounce place.

We walked in and I went into sensory overload. Between shrieking children and the fans keeping the bounce houses inflated it was very noisy. It was also super warm in there.  We found Connor and Brent in the back. Connor seemed happy enough watching his classmates run around, but we were determined he wasn’t going to just sit there and be an observer.

  

Clara climbed into the bounce house and Brent heaved Connor up the slide to her waiting arms. They bounced a little in the house and then she took him to the slide. We spent the next 45 minutes moving from one bounce castle to the next repeating that pattern.  Clara climbs in, one of us heaves Connor up the slide, they giggle and bounce a little and then slide down.  Twice, kids from his class came to bounce nearby or talk to Connor and he loved that.

When it was time for food and drink, both kids inhaled pizza, juice and cupcakes. After the snack, some of the other kindergartners headed back out to bounce more, but the four of us had reached our limit. We thanked the mom, said happy birthday to the little boy and stepped outside into the cool, fresh air.

We had survived a bounce house birthday party.  It took four of us, but we did it.  Well, really Clara did it. Without her, I don’t think Connor (or Brent or I) would have made it much longer at the party and certainly wouldn’t have had as much fun. She makes everything fun, everything possible.

Only 49 days?

Written February 19, 2018

We’re 49 days into 2018 and it’s felt like a whole year.  There have been more doctor appointments, fun moments, dramatic tears, exhausting days and questions without answers than 49 days can possibly hold.

Connor & Ariel

The good stuff has been really good.  We had a great family trip to Disney World. Outside of a side trip to urgent care for extreme constipation, Connor had an amazing time. He was such a flirt with the princesses they all wanted to take him back home to their castles. He braved a couple of rides, but mostly just loved meeting the characters and seeing the shows.

The drama at home, mostly around Connor and meal times, has escalated to a point where we feel desperate for answers.  We’re waiting for our insurance to approve behavior therapy in hopes that will help.  We’re also considering inpatient treatment and medication. One of Connor’s physiatrists said recently “You all can’t keep going like this” and she’s right. Connor has started scraping the back of his head and pulling his hair when he gets mad. Brent and I are exhausted, frustrated and just emotionally drained after every meal.  And poor Clara just eats as quickly as she can most nights, so she can be excused from the table.  When I took this new job three years ago one of the great things about it was that unless I am traveling, I’m home for dinner. I had these grand visions of what dinner together every night would look and feel like and this is far from it.

Connor had three fainting spells while in his stander last fall and so we have now added cardiologist to the list of doctors we see. He had an eco-cardiogram and everything looks fine with that so there is nothing to indicate his fainting is because of his heart. But then what is it?! We’re following up with a neurologist and making some adjustments to his standing routine to see if that prevents it from happening again.

Weird spots on his cute face

At the end of January, mysterious spots showed up on Connor’s face. After visits to the Minute Clinic, the pediatrician and urgent care resulted in blood work, strep tests, allergy test and measles testing all in one week, everyone’s response was the same – “We don’t know. It’s probably a virus.”  Super helpful. The spots didn’t seem to be contagious or to really bother him, so we just lived in the tension of not knowing why these spots are on his face (and nowhere else on his body). Now after three weeks they are starting to fade, and I hope will be gone soon.

In January at a pediatrician checkup, blood work showed that Connor’s kidney levels are a little off. Kidney issues are often a part of Joubert Syndrome, so the pediatrician recommended we follow up with a pediatric nephrologist.  Of course, there weren’t any appointments for seven weeks, so we go to see this new doctor in a week or so.

See? A lot in only 49 days.

Here’s hoping the next 49 are uneventful.

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.