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.

Life in Deep Waters

My work is as part of the national staff of the Evangelical Lutheran Church in America. Recently, a colleague led a devotion from Kelly Fryer’s “Reclaiming the “L” Word” that stuck with me.  It focused on Jesus’ calling of the disciples and his teachings around following him.  In Luke 5, it says Peter and his friends had been out fishing all night and hadn’t caught a thing.  Jesus was on the shore teaching and when he was done, he turned to the fisherman and said something to the effect of “If you want to catch something worthwhile, you have to go into deeper waters.”  I’m sure they were overwhelmed and scared to think about heading out to the unknown, deeper water with their ill-equipped, tiny boat.  But they did, and their nets weren’t big enough for the catch they found.

As we shared as a staff when God has called us into deeper waters, my heart started to swell and my eyes glistened.  Being the parent of a child with special needs is being called into deep waters every day. It is the challenge and opportunity to go into deep, sometimes rough seas. It’s navigating uncharted waters and praying you don’t crash.  It’s feeling overwhelmed and ill-equipped.  It’s trusting that things will be ok.  It’s hoping you are doing the right thing for your family.  Living daily in deep waters means you’re almost always tired – weary from all the unknowns, worn-out by the fight against the waves and the current, drained from the near constant worry, exhausted from caring for the others in your boat.

As a parent, it’s scary and hard to go into deeper waters.  When most people make the choice to become parents there is a certain realization that this parenting thing is going to be difficult, but nothing prepares you for the reality of this journey when it involves a special needs child.

But just like those fishermen who answered Jesus’ call and challenge to take their boat to deeper waters, the rewards and blessings of a life lived in deep waters are unparalleled. Deep waters are where treasurers lie.  Some of the most beautiful, unique and rare creatures in all of creation live in deep waters.  Being a tiny boat among crashing waves makes you realize how small you are and how big the world is…which quickly helps you prioritize what really matters in life.  And maybe it’s because my greatest peace comes from being by or on the ocean, but I don’t think there is anywhere more beautiful than the view from deep waters.

Being the mom of a child with special needs has brought blessings and rewards that parenting a child who is typical simply does not.  My love for my children is equal, but there is undoubtedly something special in raising Connor.  We celebrate more.  We snuggle more.  We forgive more. We marvel more.

Living life in deep water makes me love and appreciate Clara’s joy, abilities, compassion and humor more than I ever thought possible.  More often than I’d like to admit, she is that voice of calm who says, “Do not be afraid.”

This is not where I thought my journey of parenthood would lead me.  I am brought to tears regularly, equally from worry and gratitude. There are many days I am in awe of my special boy, a true unicorn of the deep waters.   There are many days I wish Joubert Syndrome did not exist and yearn for a simple life near the shore.  I am thankful daily for those in the boat with me and for those who cheer from the shallows. 

I am tired, but oh how my nets are overflowing.

Mama Bear Reporting In

Smooches

I often have big mouth.  I have lots of opinions and frequently feel free to share that with others.  When I’m passionate about something, I speak the truth.  When I see injustice or am frustrated by others, I speak up.

I’ve realized in the last few years that perhaps this core piece of my being was created in me so that one day when a therapist looks at me and speaks words that I hear to mean she has lost hope in our little boy, I have it in me to fight for him and demand that others do the same.

As you may have guessed, we had a fairly rough IEP meeting not too long ago.  Connor has been in his new classroom since mid-February and it was time to gather the teacher, aide, therapists, social worker and principal for a conversation.  These meetings consist of a lot of people with a lot of opinions around the table and often it feels like there isn’t enough space or time for all the words flying out of people’s mouths.  This time felt especially that way. 

Figuring out how to walk in a gait trainer

Connor’s physical therapist, who truly adores Connor and recognizes how smart and great he is, told us we really need to get him a power wheelchair because walking with a walker or gait trainer is hard for him, makes him tired and he doesn’t like.  She also said that she thinks he may be made fun of by the other preschoolers because he’s pushed in a wheelchair like a baby instead of being independently mobile.   

My heart sank and fury started to build in me.  I did manage to control myself enough not to swear or scream at her, but rather calmly told her that we haven’t given up hope that Connor will walk (even if it is with assistance) and that we believe in him.  I told her I don’t care if he enjoys using the gait trainer – that’s not the point right now.  And perhaps if they have him practice every day like we told them to do when he started in January, his tolerance and strength will build and it won’t be so hard or tiring for him.  But well played, therapist lady, with “the other kids will make fun of him” line.  This mama’s heart isn’t that squishy.  I came to terms a long time ago that someday, maybe even today, my child would be teased for his disabilities.  I know he’ll be judged by others because of what he seemingly can’t do.  I just didn’t think it would be by his own therapists.  So I declined her recommendation of the power wheelchair (three times in the one conversation) and asked her to continue working with standing and with the gait trainer.

Then a seemingly clueless Occupational Therapist tried to share, but really that just felt like Brent and I telling her what we do at home and in our private therapy to help with fine motor.  Sigh.  I get that funding is being cut and everyone has a full case load, but when you’re supposed to be the expert I expect you to be one. Sometimes I wonder if I expect too much from people. 

Connor’s vision therapist gets him, believes in him and challenges him.  Thank heaven for small miracles.

And then the speech therapist started.  This was the first time we had met her.  Connor has 45 minutes of Speech Therapy each week, at least half of which is in a group session.  So this woman after five weeks of seeing Connor, mostly with other children who are verbal, had the nerve to say not once but several times that she doesn’t think Connor will ever speak and basically we should focus all our attention on finding the right augmentative communication device for him to use.  I wanted to cry and scream – HE’S FOUR YEAR OLD!  DON’T GIVE UP ON HIM!  Instead I held it together and after thanking her for finding the current communication device he’s using, firmly told her we were not giving up on Connor and that we’d like her to keep working on verbal language skills with him.  She seemed baffled and a little pissed.  Later, when she was going over his new speech goals, I insisted that she keep a verbal language goal in there.  She said “You really want to keep one in there?  I don’t think this is possible for him.”  I looked right at her and said, “Keep it in.  I know that if it’s not in there, you won’t work on it.”  It’s the only way I can hold her even remotely accountable for doing what’s best for my son.

SUPER excited about his new shoes

So needless to say, I am looking into private physical and speech therapy now.  Connor’s at a critical age and we need people on our team who believe in him and push him to be all that he can be.  I’m not confident he will get that at school, so we’ll pay someone to do it.

There was a time in my motherhood journey when I thought my mama bear mode would be needed when I had to confront the neighbor kid for hitting my kid or demanding the principal take action against a bully.  I didn’t think I would have to do it when he was only four years old.  I didn’t think it would hurt my heart as much as it does.   I didn’t think it would be with people who are supposed to have his best interest in mind.

That’s a really long way of saying we are pushing through.  And that I’m thankful for my big mouth and the gumption to speak up when need be.  I’m also quite aware that all of this pushing might be more for me than it is for him and I pray every day it’s not.  It’s a chance I have to take.

Crazy, Wonderful, Stressful Months

Well hello, blog reading friends.  It’s been a while.  Life has felt like a whirlwind since the fall, so I will try to catch you up!

Getting on the bus for the first time!

September
Brent starts his new job, so Connor gets to start riding the bus to school!  He loves it and his bus driver, Mr. Randy, is so kind and awesome.  In order to comply with the district’s safety rules, Connor must be in a wheelchair in order to ride the bus.  Luckily, we find this great organization not too far away that gives away second hand wheelchairs.  We are so thankful as getting a new one probably would have taken months and cost hundreds of dollars!

Connor starts day care and does splendidly.  He really enjoys being around “typical” kids and his presence doesn’t seem to be too much of an extra hassle for the teachers.

We put an offer on a great home in Bartlett, IL.  The offer is accepted and we start thinking about the final stage of our move.

October
Connor loves preschool in Mrs. C’s class.

We meet the new orthotist who adjusts Connor’s DAFOs (ankle braces).  Everything looks great and he encourages us to keep Connor standing and walking every day.

We sign Connor up for additional therapies through Easter Seals because his service times were cut when we moved to Illinois.  He now gets a hour of OT and a hour of feeding therapy there every week.

Connor turns four!

Selfie with mommy

November

Work takes me on the road a lot this month.

Connor has his first ophthalmology appointment in Illinois.  Time for a new glasses prescription.

Brent is laid off from his job and starts another stint as stay at home dad.

November 30^th we close on our new home.  Yippee!

December

Clara turns 10!

Connor starts using a gate trainer a little bit each day at school.

Both kids participate in St. Paul’s Christmas program.  They are behind adorable.  Clara loved playing bells and singing in the choir. 

The kids say goodbye to beloved teachers and friends. Three days before Christmas and we do the move from Villa Park to Bartlett.

January

Clara and Connor start new schools to mixed reviews.

Feeding Connor has been rough the last few months.  He often refuses food and we end up reading a book, singing or telling a story to get him to eat.  We’re right back to where we were before all this transition started.  I’ve reached out to therapists and doctors for some tips on how to curb this behavior issue and I’m hoping that we can get it figured out in the next month or so.  The good news with feeding is that Connor is now eating almost 100% “regular” food – no more purees!

Connor changes classrooms three weeks into his time at the new school and things are going great.  His therapists are really challenging him.  Most notably, they have found a communication system that seems to be working.  We have been asking speech therapists to help him communicate for 15 months and no one has been able to find a system that works.  Now Connor has a board with 20 buttons that he can use to communicate what he wants and needs.  He got the hang of it really quickly and we are hoping to add more words soon!  I can’t tell you how amazing it feels to see him point to the pictures to make a sentence.  He is so proud of himself and we are filled with hope that this just might be the answer.

So it’s been a crazy few months. Wonderful, busy, hard, joyful, stressful months.  We are so thankful to finally have this move behind us and look forward to all that 2016 will bring!

No Room at the Inn

Three weeks ago, Brent was hired for some full time, contract work at a local engineering company.  They wanted him to start a few days later and while this was great news it left us in a bit of a lurch since we didn’t have any child care arranged for the kids.  We decided Clara would go to the After-School program the YMCA hosts at her school.  A couple of phone calls, one day on a wait list and three single-sided forms later she was registered and began a few days later.

Connor, on the other hand, was not so easy.  We checked around with people we knew to see if anyone they knew would be willing to watch Connor after preschool.  No luck.  We called several day care centers, but the bus from his preschool wouldn’t transport there.  Finally we found one that the bus would take him to and while they had room for him, because of his special needs they had to get approval from their corporate office.  So we filled out a pack of forms, did a site visit with Connor, got them a copy of his IEP and then waited.  More than a week later we received a call saying that the center could take Connor, but only if WE provided a one-on-one aide for him.  IF WE HAD SOMEONE WHO COULD WATCH HIM DON’T YOU THINK WE WOULD JUST HAVE THAT PERSON WATCH HIM AT OUR HOUSE?!  So because we couldn’t do that, they couldn’t or wouldn't accept Connor into the center. 

We were now down to the last possibility on the list and gave them a call.  They had room for Connor and asked if we could come to the center and talk things through.  We went an hour later and while the director was very nice, the whole time we were talking about Connor’s needs he just had this “o.m.g.” look on his face.  We toured the facility, saw what would be his room and then when we went out to the playground I asked the director if the center had ever had a child with special needs like Connor’s.  He shook his head.  No, never a child in a wheelchair or who wasn’t mobile.  Never a child who couldn’t feed himself or had zero language skills.  I could tell he felt bad about this confession.  I gave him a little smile and said, “Neither had we until Connor.  There’s a first time for everything.”  To which he smiled back and said, “We really want to work with you and see if this is possible for him.”  After the tour he said he needed to talk to his corporate office and get approval.  This time, however, we got a call the next day!  He said that if we were willing to give it a try that they were, too.  So on Monday Connor will start a trial period at this center.  They aren’t providing an aide, but there are two teachers and 11 kids with a floating teacher who will sometimes be in the room.  We are just grateful for a place that is willing to give Connor a chance.  We realize that having Connor in the room changes the dynamic for the teachers and the other kids.  We realize that having Connor there is a lot more work for the adults.  We realize that Connor won’t be fully engaged in everything, but for now we just need a safe place for him to go after preschool.  We are thankful and hopeful, but also realistic that this may not work out.

And while we have been thinking about what place will take Connor in after school, we’ve also been doing a lot of thinking about our forever home here in Illinois.  We are still renting a wonderful home from the church and while it’s working out great we are definitely feeling the need to settle into a house and be done with transition!  The process of finding a house has been complicated.  Not only is the housing market difficult in the area we need to be in, Brent and I have been agonizing over the layout of the home.  We are trying to see into the future and forecast what Connor’s mobility and independence will be.  We’re trying to imagine if it would be better, easier, fairer to have his room on main floor even if the rest of us are upstairs.  We’re trying not to let go of our and Clara’s desires and needs for this next home.  It just feels really complicated right now and we are wondering when or even if we will find a home that work for us, whatever that means. 

Connor was evaluated and approved for additional Occupational Therapy and Feeding Therapy at the Easter Seals and now we are on a wait list for both of those.  I’m especially looking forward to getting back into Feeding Therapy as meals have been frightful.  Every breakfast and about half of his lunches and dinners are spent screaming, crying and thrashing around.  Sometimes we can get him to settle down and eat and sometimes after 20 or so minutes of either trying to calm him or trying to jam food into his mouth, we just give up.  I’m worried if we don’t get this under control he will have lost weight by his birthday well visit and they will want to talk about either doing more bottles again or something more invasive.  Both would feel like huge steps backward after all we’ve been through with feeding and how far he has come.

Ready for the first day of Sunday School 2015!

It hasn’t been all hard the last few weeks.  The kids both love their schools and teachers.  I have had virtually no travel for work since the end of July, so we have enjoyed more family dinners, nights and weekends together in the last two months than we probably did in the year before I moved to Illinois! Brent is excited about this new work he will be doing.  The neighbor kids are hilarious. We are becoming familiar with and fond of an extremely hospitable congregation.  So we just take one day at a time.

Prayers and good vibes for peace and patience in the midst of all of this are appreciated!

Taking selfies on mom's phone