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.