Tag: special needs

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.

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

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!

A good day for KC!

by James, posted in Victories

Darlene and I had an opportunity to attend a groundbreaking ceremony yesterday. This was not ordinary ceremony. This ceremony opens the door more families with special needs to get the help they so desperately need. Yesterday Shawnee Mission Medical Center broke ground on the new B.E. Smith Children’s Pavilion.

This new facility will be the home to the Lee Ann Britain Infant Development Center. It will replace the aging former school they currently reside in. For those not familiar with the work of the Britain IDC, they provide therapies for children with special needs. They currently serve 200 families a week between the preschool, pathways autism program and the various therapy’s they offer. This new facility should provide the opportunity to serve more families in a state of the art facility.

For me, one of the most powerful times was when Doug Smith, whose father the center is named for, stood to speak. He had a short speech, but one that carried a powerful message. He took the crowd to Exodus 3: 1-5.

Meanwhile, Moses was shepherding the flock of his father-in-law Jethro, the priest of Midian. He led the flock to the far side of the wilderness and came to Horeb, the mountain of God. Then the angel of the Lord appeared to him in a flame of fire within a bush. As Moses looked, he saw that the bush was on fire but was not consumed. So Moses thought, “I must go over and look at this remarkable sight. Why isn’t the bush burning up?” When the Lord saw that he had gone over to look, God called out to him from the bush, “Moses, Moses!” “Here I am,” he answered. “Do not come closer,” he said. “Remove the sandals from your feet, for the place where you are standing is holy ground.” (Christian Standard Bible)

Mr. Smith told the crowd they were standing on holy ground. That really stuck with me. See, this was not simply another groundbreaking ceremony. This was a God moment. For me, it was a visual reminder that God is moving in mighty ways in the special needs community here in KC. A good vision combined with a hospital and donor who desire to honor God produced an amazing outpouring of love and support.

It caused me to stop and consider where God is calling me. A great dream of mine was rekindled yesterday. The dream had somewhat faded from the doubt the enemy casts. I had forgotten how big God is. Yesterday, He reminded me.

We have a great work still to do when it comes to reaching the special needs community with the gospel of Jesus Christ. It will not be easy or quick, but it is possible. May God use us in a mighty way.

The best candlestick maker Kansas has ever seen!

by James, posted in Victories

We had a first last week. We got to see Super D in his first music program! The first grade classes at Tonganoxie Elementary presented “Three of a Kind”. Daniel got to play the candlestick maker.

Daniel’s para had asked me if we were interested in having him participate. I was very interested, but somewhat apprehensive. After all, crowds tend to be overwhelming for him. I had the chance to meet with the music teacher beforehand. She had an excellent plan.

In order to get Super D to his place on stage, she assigned two boys to hold his hands and lead him to the “boat” for their part of the program. This two boys took their job very seriously, making sure Daniel go to where he needed to be and back safely. After his part was done, he did very well sitting in the chair they had provided for him.

We discovered a new talent during the show. Daniel has the ability to blow raspberries on his hand to the tune of a song There is nothing like hearing a loud fart sound coming from the stage in time with the song.

I would have been more proud if he would have busted it out in his armpit, but hey, we have to have goals.

It was a wonderful evening. I cannot say enough about the excellent staff at the Tonganoxie Elementary. They have been so good to use over the last two years. Mrs. Haney went above and beyond, in my opinion, to see that Daniel was included. All the staff there has been so good about that.

It was an emotional night for me. I’m tearing up while typing this. I never thought I would get to see Daniel in a school program. That was one of the many dreams that died for me years ago. But thanks to a first class school staff that really cares about the kids, that dream was brought back to life.

This was also another view into the changing world. See, Daniel is just one of the kids. Those two boys did not fear their job, they seemed honored by it. Daniel’s whole class loves him. When he is gone, they ask about him. They do not see my boy as an outsider. He is simply Daniel, one of the class. That warms my heart.

Change is possible in this world, if we would only take our cues from a first grade class.

Tips and Tricks: Freedom from the chair

by James, posted in Tips and Tricks

Going out in public is difficult for Daniel. He often gets overwhelmed with the people and the noise. When this happens, he tends to shut down and either run or flop down on the ground. In order to combat this, we got him a wheelchair last year. You can read about that in the post Tips and Tricks: Managing Crowds.

This has been an excellent way for us to manage everyday life and still do things the other boys want to do. Yet there are times when the wheelchair limits are ability to do and see things. In these cases, we would divide and conquer.

This method is manageable most of the time. We realized this would be a problem when we planned our vacation to Colorado Springs this year. We wanted to do several things that required Daniel to walk, and neither of us wanted to stay behind. Fortunately, we found Child Harnesses by Elaine, at www.childharness.ca. (This may sound like an commercial, but I love the product that much!)

I was not sure about the harness thing at first. It is a little strange to put your child in a harness. However, it was one of the best purchases we have ever made in terms of improving our quality of life.dscn1352.jpg

The harness is a simple strap setup that goes over the shoulders. There are two straps that wrap around under the arms and across the chest. I spent the extra money and had Elaine sew a handle on the back and put the two handed buckles on the harness. I also ordered two crotch straps and the parent to child tether. All total, with the upgrades, including shipping from Canada, the harness cost me $178.00.

This may seem like a lot, but it is a small price to pay for the piece of mind and the freedom we got. We 20170804_101511.jpgwere able to hike and take the Mollie Kathleen gold mine tour, which took us 1,000 feet underground. Both of these activities would not have been possible without the harness. With the parent to child tether on, Daniel can not get more than two feet from me. When he would try to flop down, instead of me attempting to manhandle him, I could grab the built in handle and lift him up. The combination of the crotch straps and strap under the arms make it uncomfortable enough he does not want to throw himself down. (The handle is not really intended for that purpose, but that is how I do it.)

If you have a child with special needs, or any child for that matter, that is prone to wander, one of Elaine’s harnesses can restore some freedom to life.

Have another way to keep your child safe in public? We would love to hear about it in the comments below. Please share this with other families.

Oral stemming and dental hygiene

by James, posted in Tips and Tricks, Victories

I took three of the four boys to the dentist a couple weeks ago. Trips to the dentist can be a challenge for any of the kids. We never know what to expect with Daniel.

I am usually prepared for the worst. Most of the time that comes from Josh and Aaron. They are both at the age where brushing teeth is not something they remember and when they do, the efforts are minimal. To make matters worse, Josh has braces. Our last orthodontist trip ended with me having a visit with the hygienist because he was not brushing well. The dentist visit ended with a similar scolding.

Super D is the wild card. So far he has done very well, aside from trying to bite fingers when she was attempting to get the x-rays. We managed to get pictures of the front teeth, but the backs were not happening. I don’t blame him, having that sensor shoved into the back of your throat is not fun for anyone.

Well, I take that back. I ran into a friend there with her two girls. The youngest was so excited to tell me how she was going to get x-rays!

Dental hygiene is another challenging area for Daniel. I’ll admit, he often only gets his teeth brushed once a week. We ended up buying him some DenTrust three sided toothbrushes. These are wonderful things for children with oral sensory issues. Daniel will still bite down on them, but we can usually get all the teeth brushed. The three sided design means one pass covers every surface.

He does better each time we go. This visit, he allowed them to brush his teeth and floss them. Letting the dentist examine his teeth was not as popular. The best part, listening to him giggle as the toothbrush tickled his gums.

The dentist asked if he had oral sensory issues. I expected her to tell me he had broken or chipped a tooth. Fortunately, this was not the case. She told me the oral sensory seeking actually helps keep his teeth healthy. The constant chewing and saliva clean plaque off the teeth and wash it away. Hopefully he continues to be blessed with good teeth.

The next checkup, Baby B gets his teeth check too. He loves to imitate Super D. Hopefully he will follow in Daniel’s footsteps when it comes to dental visits.

Lord, our Lord, how majestic is your name in all the earth! You have set your glory in the heavens. Through the praise of children and infants you have established a stronghold against your enemies, to silence the foe and the avenger. – Psalm 8:2

Divine intervention

by James, posted in Victories

The last time I wrote a blog post, I promised to get back into the swing of things. Well, life happened. Or maybe I should say I just got lazy! Either way, I have not written gotten back into the habit of posting every few weeks.

The last post, State of the Union, mentioned we had started a new medicine and had gone 5-6 days without a seizure. Well, now it has been about two months we have been on the Felbamate. We went 30 days without a seizure. When Super D finally had one last week, it was minor and only lasted 10-15 seconds. This is a huge blessing. To go from at least 3 big seizures a day to one every month has made such a big difference.

For the first time in years, Daniel has called us momma and dada. He is much more alert and responsive. We are seeing less behavior issues. He is beginning to follow simple one step commands again.

In the last week he has gotten all his shapes right at school. His IEP goal was 80%, if I remember correctly. 100% is not out of the question now.

Smiles and laughter are the norm now in our house. For so many years we longed to see the sparkle in his eyes again.

It is easy to take developmental milestones and normal child behavior for granted until it is not there.

Did we find the miracle drug? I don’t’ think so, but it is a miracle. I had settled in to the idea that it was not God’s will to heal him and any seizure control was going to be divine intervention. That is what we have experienced the last month.

I have a few ideas why God chose to wait this long to bring some seizure control to Daniel, but I do not know the exact reason. I am thankful for the wisdom he has provided over the last five years and the relieve Super D has now.

Does this mean he will be seizure free one day? I don’t know and I honestly do not want to know. I’m not sure I could handle knowing exactly what God has in store for the years to come.

Regardless of what is to come, we will rejoice in His grace and mercy, even if the outcome is not what I want or desire.

God is good, full of grace and mercy, even when things do not go as we want. He sees the beginning from the end, where I only see the here and now. What a great comfort it

The eyes of the Lord are everywhere, keeping watch on the wicked and the good. Proverbs 15:3

is to know Him.