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.