Welcome to Life with Super D

Featured by James, posted in Uncategorized

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Life with Super D is my way of sharing the struggles, victories and setbacks we experience as we walk through the challenges associated with raising a child with special needs. My desire is to provide an honest, open look into our life in order to provide some hope and encouragement to other families walking a similar path. To those who seek to understand what life is like in our situation, I hope to provide some insight into the joy, pain and daily struggles that come with raising a child with special needs.

I hope you will subscribe and join us in our life with Super D.

People were also bringing babies to Jesus for him to place his hands on them. When the disciples saw this, they rebuked them. But Jesus called the children to him and said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” – Luke 18:15-17

A Crazy Month

by James, posted in Uncategorized

May has been a crazy month for us. First of all, school is out. This throws Super D for a loop. As I am writing this, he is in the other room being very vocal and completely annoying the crap out of Ben! We also had some major milestones in the house. Our oldest graduated from High School this month, Daniel will be off to middle school next year and Ben finished Kindergarten! It has been a crazy, and emotional, month.

Some of the craziness is a good thing. Daniel has been a handful, but that is the good part. The VNS appears to be making a difference. He has been more vocal, often practicing numerous consonants, which he has not done in years. There is a trade off to this, however. As his mind clears up he gets so ornery! I suspect part of it is he does not know what to do with this new understanding of the world.

If you think about it, it has to be a little scary. For him, the fog he has lived in for the last nine years is starting to lift. He suddenly is processing more input and the ability to make sounds he has never done before, or at least in years. Saturday he had an outburst in a restaurant. He was excited and proceeded to tell us a whole story in his own language. It was loud and had most of the patrons looking. It was such a wonderful thing to see for us. The best part of it was the people sitting behind Daniel gave me a look of joy as we were leaving. They got it, as so many here seem to.

I am excited to see what the coming months bring for Super D!

Conference Time!

by James, posted in Ministry

This month’s blog comes to you from Cleveland Ohio!

This weekend is the 2022 Inclusion Fusion Live conference at Bay Presbyterian Church. I have been fortunate enough to be able to attend this year. I have really missed the opportunity to gather with other special needs ministry leaders. It is a powerful thing to be surrounded by so many knowledgeable and talented ministry leaders and volunteers.

It has been a real encouragement for me. I have had the chance to catch up with people I have not seen in years and meet some amazing people. God has opened some interesting doors today to help refine the vision and mission He has called us to in Colorado Springs.

My conference trip started a day earlier than it did for most of the attendees. I flew into Cleveland on Wednesday night. I have been in contact with a church in Canton, Ohio over the last few months for a project I am helping our church with. They were kind enough to give me a tour of the day program they run for adults with disabilities during the week. It was such an amazing thing to see how this church is making such a huge difference in the lives of not only the participants, but also the workers.

For those of you who work in the special needs ministry world, I encourage you to attend one of the conferences around the country. The next big one I know about it the Wonderfully Made Conference in Kansas City in October. Proverbs 27:17 tells us, “Iron sharpens iron, and one person sharpens another.” There are few ways that are better to be sharpened than to surround ourselves with experts!

A Cross to Bear

by James, posted in Stuggles, Victories

I hate social media, but believe it is a necessary evil in today’s world. This is especially true for an author. There are times when it serves a purpose. For me, it is often the reminder of memories shared in the past. Last week I was reminded of a quote stumbled on while doing a research paper for school. It struck a cord with me, just as it did several years ago.


“Christianity has always insisted that the cross we bare proceeds the crown we wear. To be a Christian, one must take up his cross, with all of its difficulties and agonizing and tragedy-packed content, and carry it until that very cross leaves its marks upon us and redeems to that more excellent way which comes only through suffering” – Martin Luther King Jr

The reality is we are not promised a life of ease, or one free of suffering. Many of you reading this know this all too well. The struggles of life as a parent of a special needs child is often full of struggles. We all face a choice when life happens and we are faced with the unthinkable. When the suffering and trials come, do we rejoice as being counted worthy or do we get angry with God?

Trust me, rejoicing in the hospital or funeral home is not easy. In fact, it is absolutely impossible when we try to do it on our own. There are days where there is no joy at all. But God is good to remind me that He is still faithful even when the pressures of life seem to be too much to bear.

On the other hand, what do we do when life is going our way and everything seems good? Are we quick to shy away from those who are suffering?

After the Roman soldiers beat and mocked Jesus, He was led away to be crucified. The literal cross He bore was too much for the human beaten human body to carry to the crucifixion site, so they forced a man named Simon to carry the cross for Jesus. I doubt at the time Simon understood the significance of this task. He simply did it because he had no choice.

The cross many of us bear is a heavy burden. It often becomes more than we can manage. Many of us are longing for a Simon to carry it for a little while. So, what do we do when the Holy Spirit prompts us to carry another person’s cross? Do we jump in and shoulder the burden, or do we look away?

It is not easy to take on someone else’s burden, especially when we have our own to carry. For a Christian, we have no option. Jesus took the ultimate burden off our shoulders, taking the cross that was too heavy for us to bear on His shoulders. To bear someone else’s cross for a few hours is a small price to pay.

One day we will be able to trade this cross for a crown.

The Next Line of Defense

by James, posted in Victories

Three weeks ago we finally made it to Denver for Daniel’s VNS surgery. We have been trying to get this done for months now. He was either sick or had been exposed to Covid the three previous times we tried to get it done.

You may be wondering what exactly is a VNS? VNS stands for Vagus Nerve Simulator. The VNS consists of two parts; a generator and a wire lead. The generator is a small battery powered box that is very similar to a pacemaker. it is approximately 1 1/2″ long, 1″ wide and 1/4″ long. A incision is make in the left chest above the nipple and a “pocket” is created under the skin to hold the generator.

Chest incision 24 hours after

The lead is a 18-24″ long wire that plugs into the generator. It has a coil of wire on one end similar to a corkscrew. An incision is made in the neck and then the lead is fished up to the incision in the neck. The corkscrew is wrapped around the Vagus nerve in the neck.

Neck incision 24 hours after surgery

The thought behind the VNS is to disrupt the electrical signals in the brain in an attempt to teach it to “forget” how to seize. It works by sending a small electrical pulse from the generator to the Vagus nerve. Initially it sends a 0.25 mA shock to there nerve every five minutes for a total of 30 seconds each time. By the end of April it will be at full strength which is 1.5 mA shock every five minutes for the 30 second duration.

There are two more functions of the VNS. Starting with the first ramp up, it will sense Daniel’s heart rate. When his heart rate takes a sudden jump, the box will sense that and send an additional shock to the Vagus nerve to counteract what it perceives as seizure activity. It also comes with a magnet that can activate the generator. When he has a seizure, we are able to swipe the magnet across the box and send pulse to the verve that acts as a rescue med.

Three weeks in we are hopeful. He had a seizure Thursday night. When I swiped the magnet, the seizure immediately stopped. Normally it takes a little time for a seizure to end. They normally look like a hill, with a peak in strength and then slowing to a stop. This went form full seizure to nothing withing seconds of swiping the box.

For us, this brings a lot of hope, hope we have not had in years. The medicines are working very well to control the seizures. Perhaps this will be the thing that brings them to a stop, or at least minimizes the frequency to a manageable state.

Book Update

by James, posted in Uncategorized

Reaching The Overlooked is now available for preorder! Hard copies will begin shipping March 12th, 2022. Don’t want to wait? I don’t blame you! It is available in ebook format for the Kindle as of February 9th, plus it will be available on Apple ibooks and Nook in the next few days.

Print copies and eBooks can be purchased by using the links below

Xulon Press (direct from the publisher)

Amazon

Barnes and Noble

Kindle Edition

January ramblings

by James, posted in Uncategorized

So, I’m a little behind with this month’s blog post. I struggled with a bit of writers block. I guess it comes from spending a lot of time in final book things. I had a couple topics, but they require a little more brain power than I could muster!

Some of the block was because January was another rough month in our house. For me, it started our with making my fourth trip from Colorado to southern Iowa in as many months. It was also the second funeral I have officiated in four months. Then we all got sick. We did not get tested, but from the symptoms I am sure we had Covid. I am not sure if we got it from Ben’s class or if I brought it back from Iowa.

The biggest disappointment from this month was canceling Daniel’s VNS surgery. The week we were all sick was the week the surgery was scheduled. The reality is we are not alone. The nurse made it sound like they cancel as many surgery’s as they actually complete right now.

This was the third time we had to cancel the surgery. Two were because Daniel was sick. The second time was different. He was exposed to a Covid positive child two hours into the school day after thanksgiving.

This has been on my mind a lot lately. A special needs classroom often has students with compromised immune systems. Yet it was another special needs parent who sent their child to school before their Covid test results came back.

Now I know their are extenuating circumstances. I doubt these parents meant any harm. To me, it is more indicative of the state our country is in. We have lost the ability, as a whole, to care about others. The idea of putting others first is foreign to many, even in the church. Covid has brought it to light in a major way. Personal rights, wants and desires have taken place of caring enough for others to put them first.

It’s sad that so many have lost the ability to think of others. For families like mine, who already fight for our kids, this is one more dangerous hurdle to overcome.

I have a challenge for February. I challenge all my readers to take this month to be conscious about how we really love others. Not just our family, but the people we encounter every day. How do you treat the cashier at the grocery store? The waitress? Our coworkers?

When our time on earth is done and the Lord calls us home, what will people say? Will they praise you with stories about how you lived and loved? Or will they struggle to find anything nice to say?

We are in control of the legacy we leave. So what kind of legacy are you building?

The Christmas Conundrum

by James, posted in Stuggles, Victories

December is here. Christmas is only five days away as I am writing this. My hope is you all have your shopping done and everything wrapped. We are officially done, well almost. A car that would not start took over the garage so one final gift could not be finished until today. I am a procrastinator, so I am usually finishing up right about now. Not exactly a good plan for someone whose sensory issues are triggered by crowds!

Christmas is an interesting time for us. This year Darlene and I had to have a discussion I never thought about. What do we do with Santa? I know, in the church world this is a topic that often creates disagreement and tension. My thought is to let kids be kids. Children need to have a good imagination and a sense of wonder. I also see how we can take the myth of Santa Clause and turn it around to create an opportunity to talk about the gift of Christ. So in our house we have run with the Santa thing.

This year we had the realization that Ben is old enough to recognize that Daniel does not have a “Santa” gift. Now, Super D has been the exception once the older boys realized the truth. I am not sure he understands the who thing, and even if he does, unwrapping presents is not his thing. Christmas gifts are too much sensory input for him. I am going on the idea that Ben will not notice what Daniel gets.

This year also brought on something I had not thought through before. We were shopping on Black Friday when my mom found a gift for Daniel, but was worried it looked too much like a baby toy. In the end she found the exact thing she wanted, but it made me think about age vs developmentally appropriate gifts. In reality this is an easy one, it is better to get developmentally appropriate gifts that he will play with, enjoy and understand.

If only it was that simple. I’ll admit, while it is best for Super D, buying a gift intended for a five year old for a eleven year old creates a little struggle inside. It is not a bad thing. It is, however, a gentle reminder he is not like his peers, or his siblings. Perhaps it is harder this year because middle school is eight months away. Maybe my subconscious has just suppressed it until now.

These realizations are not a bad thing. Daniel is not like every other child his age, and that is a wonderful thing. One of the buddies at church described him as a big teddy bear. He is super lovable and sweet. He also has an ornery streak a mile wide that can send me over the edge in the blink of an eye. The reality is, that is very normal behavior for a fifth grade boy! Moments like the gift realization are blessings that put the “normal” behavior into perspective which creates joy and not just frustration or anger. I wouldn’t have it any other way.

Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance. And let endurance have its full effect, so that you may be mature and complete, lacking nothing.
James 1:2-4

Quick update

by James, posted in Ministry, Stuggles, Uncategorized, Victories

So, Daniel’s VNS surgery did not happen. He was exposed to someone who was Covid positive within two hours of returning to school after thanksgiving. Thankfully his Covid test was negative and he returned to school on Friday. The downside is we have to wait until January to get the VNS.

Good news in the book front. The first round of editing is done! We are on track for a February release.

Have a great Sunday!

The Other Project

by James, posted in Ministry

I promised an update on the other project I have been working on. So here it is,

I wrote a book!

Well, to be honest, I finished one of the two I have been working on. I was waiting to get a good idea of when it will be published before writing this. That has not quite gone as I had planned. 

A couple weeks ago I found out I missed an important part of the timeline, so I had in my head it would be finished sooner than possible. I also found out we had a substantial setback in the process, which delayed the publication date by a couple months.

I was frustrated at first, but this may be a blessing. Everyone is pushing to get their book in stores by the Christmas. So instead of potentially getting lost in the crowd, mine will be in print after the rush has died down. God had a better time in mind than I did.

So what is it about? Disability ministry of course. I think the best way to sum it up is with a few sentences taken from the introduction.

“My wife is constantly telling me to not reinvent the wheel. Then one day I was struck with the overwhelming idea that maybe, just maybe, we have to reinvent the wheel. One morning I was sharing a thought I had with my wife on reinventing the wheel. Over the course of the discussion she shared something she noticed. I know the “how” of special needs ministry and can share that with ease, but the why is another story. Her take was if more pastors, elders and congregations knew why having a disability ministry was so important, they would be more willing to support that ministry to its fullest extent. That conversation got me to thinking about the why.”

The how is easy for many of us in disability ministry. The why is, not so much. The book is about the why. Why it matters to Christ, the church, and the family.

Now the next big question. When will it be available? I wish I had a good answer, but right now I do not. Best guess at the moment is mid to late February, based on the amount of time the setback delayed things. Right now the editor has it for the first round of editing. It will go through a second round before going to the production stage.

I will share more when the publisher starts the production work!

The Passing of time

by James, posted in Uncategorized

I have heard it said that time flies when you are having fun. I believe the last two years have proven that theory wrong. Time has flown by, but it was not fun. I realized today it has been almost two years sense I last made a blog post. December 2019 was busy. Then 2020 came. Nothing happened in 2020. We spent a lot of it locked away from the world for Daniel’s sake.

While 2021 has been better from the standpoint of getting back to some degree of normal, it has been harder than 2020. We lost my mother in law in January and a week ago I was finalizing the service for my grandfather. We have been fortunate to stay healthy.

There have been some good things that have happened in the last year. Super D was approved for a Vagus Neuro Stimulator. It is an interesting device, somewhat like a pacemaker, only attached to the Vagus Nerve in his neck. The idea is it will retrain his brain not to seize by sending a small shock for 30 seconds every five minutes. As long as he stays healthy, he will have that done in December.

I began the blog with the best intentions and lofty goals. Life with Super D makes it difficult to write a blog post every week. On top of that I have been working on another project, but more on that later. The hope now is to publish a blog post every month.

I have had some interesting experiences over the last year. Even though the blog has been stagnant, I have received numerous emails about the harness we bought Daniel. Those have been a bit of encouragement to start blogging again. The other project I have been working on is all about helping and reaching our families, even if it is just one. God has been drawing me back to this work with those people who just need a few answers. You can read that post here.

This month will be a little different. I expect to release another post in a few weeks with details on the other project I was working on. There are a few things that need to be finalized first.

Stay tuned!