Play Time

by James, posted in Victories

Super D has never really played with toys. Even early on he was not terribly interested in them. Looking back, we realize this should have been a red flag. However, his brothers were not into cars and trucks as much when Daniel was ready to play with them, so it doesn’t seem too odd. Every little brother wants to be like his older brothers and do what they do.

So flash forward 6 years. Now we have Benjamin. There is about the same number of years between Ben and Super D as there are between Super D and Aaron. Baby Ben was not our idea, but thankfully God knew we needed him and blessed us with a fourth. My grandfather was insistent the baby would help Daniel.

IMG_20160819_145525.010-1We had seen little signs of this. Daniel started showing interest in everything Ben had. Recently, we had a major breakthrough. Super D got a truck out of the toy box and sat down on the floor to play trucks with Ben. Not only was he playing with toys, and the correct way, he was intentionally interacting with another child.

This is a huge milestone for Daniel. Proper interaction with others is a critical life skill, one that we often take for granted. While it might be a minor step forward, in our world any step forward which is not followed by three back is a big deal. In our world, progress is always met with praise and celebration.

Shout for joy to the Lord , all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his ; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations. – Psalm 100:1‭-‬5

Tips and Tricks: Limiting the Wandering – Part Two

by James, posted in Tips and Tricks

The garage is a big temptation for Super D. I guess I should refine that statement. The tractor in the garage is a big temptation for Super D. He loves tractors. If the garage door is open, he is likely to be sitting on it. It was a great blessing to see him get excited over something until the day he discovered he could open the door to the garage and have access to the tractor anytime he wanted.

His new found “freedom” created new challenges for us. For a while a security chain worked. It was not long before he was tall enough to reach it. The big problem we have is, if I raise the chain up to where he can not reach it, my 10 year old will not be able to reach it either. Super D is almost as tall as he is.

The solution hit me one night when the janitorial closet door closed behind me at work. A storage room autolock knob would allow us to have access to the garage from inside the house while keeping Daniel out. The new knob replaced the existing knob without any modification to the door. We keep the key hanging on a cup hook across from the door. It is within Super D’s reach, but he does not show any interest in it at this point. Even if he did, he does not have the fine motor skills to get the key into the lock.

I also installed one on our downstairs bathroom to keep him from playing in there. The best part, each lock has a number on the package. If you buy locks with the same number, they will be keyed the same. In our case, the bathroom is across from the garage door. One key opens either door. The next door to get one will be the door to the basement.

One caveat, I would not use this method if your garage is one of the main emergency exits in your house. We have two other exits, so there is little concern about lost keys in an emergency situation.

What methods do you use to limit access to areas of your home which could be dangerous to a child with special needs?

A Strange Sunday

by James, posted in Stuggles

Sunday was a strange day for Super D. He had two larger seizures, which is not out of the ordinary. It was the seizures themselves that were odd. Both seizures caught him by surprise.

Normally Super D knows when he is about to have a seizure. I do not know exactly what it is that alerts him. We wonder if he is seeing auras or has some other visual indication one is coming. Whatever it is, it has been a huge blessing. Falls from a seizure had been non-existent for a year or more until two months ago.

We were visiting a relative in July. Our boys and one of my nephews were playing in the yard. Daniel started running around the yard and then had a seizure. He went stiff as a board and fell over backwards. We assumed he could not find an acceptable place to set down. We wrote it off as a fluke and went on.

That was until Sunday. Shortly after getting up, Daniel was playing with his basketball goal that hangs on the basement door. Suddenly I heard the half groan, half cry that he emits often during bad seizures. I was only a few feet away, but by the time I got to him he had his knees against the door, head back and those little fingers caught in the basketball net. That net was the only thing that kept him from falling on a chair he pushed over there. Later that evening he had another one in the driveway. He was standing beside my SUV and went down.

Darlene wonders if the ADD medicine makes him feel so off that he can not tell the difference between what is the new normal and when a seizure is coming. I’m hoping it is only a fluke, however, it very well could be warning us something is wrong. Unfortunately, only time will tell. 

The Lord is gracious and compassionate, slow to anger and rich in love. The Lord is good to all; he has compassion on all he has made. All your works praise you, Lord; your faithful people extol you. – Psalm 145:8‭-‬10

Today is a Special Day

by James, posted in Uncategorized

Today is Daniel’s birthday! Six years ago we were blessed with another wonderful baby boy. At that time we had no idea what a blessing he really was. The last 6 years have taught me so much about life, and more importantly, about God’s great mercy and love for His children.

Happy birthday to our super hero!

 

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The Power of Respite

by James, posted in Victories

When Super D graduated from the Britain Center, I made a promise to the ladies there. I promised them I would take advantage of the various respite nights around the city. I’ll admit, I did not want to follow through. I was not comfortable leaving him with a bunch of strangers. I figured I would take him once and then I had kept my promise.

I knew we needed some time away. Just a few weeks before, Darlene and I admitted to each other we were falling apart. It was not a go our separate ways falling apart. We just fought as much as we talked. I was stressed and very irritable. For some reason she does not like me that way. Go figure.

To make this easier, we chose the church where his former teacher attends. She said she would be his buddy for the night. Even knowing she was watching him did not ease my nerves.

Once I got over my nervousness, I was able to realize why the ladies at the Britain Center had been so insistent we take advantage of some respite. We left the baby with some friends and took the older boys out. We were able to relax and focus on Josh and Aaron. That is something which does not happen as often as it should.

It was great for Super D also. He was able to run and play in a setting tailored to children with special needs. He even made a friend he played with throughout the three hours he was there. That in itself is worth a fortune, as he normally does not play with others.

If you have the chance to take advantage of a local respite night, I would encourage you to do so. If your church is looking for a way to reach the world around you, a respite night could be the answer.

Carry each others burdens, and in this way you will fulfill the law of Christ – Galatians 6:2

Tips and Tricks: Limiting the Wandering – Part One

by James, posted in Tips and Tricks

One of the biggest safety concerns we face with Super D is his wandering. This is a concern with a lot of special needs children, especially those on the spectrum. Controlling the wandering while still providing a safe and pleasant environment is crucial. Yet this is often easier said than done.

Sometimes it takes a little creativity and, in my case, a little redneck ingenuity.

Our first wandering issue we had to handle was at bedtime. All kids like to fight sleep. However, with Super D, fighting sleep means running out of his room. He also wakes up in the night. It is vary rare for him to stay in bed all night long. If he wakes up in the night, he will run the house and possibly the neighborhood. We took a trip to Branson, Missouri, after the baby was born. At one point Super D woke up in the night, went to the kitchen in the condo, got some chips and then turned the tv on.

There are special beds out there which are basically large cribs, but for a 5-year-old who is the size of a 8-year-old and loves to climb, this would not have worked. I thought about turning the door knob around and locking it from the hall. However, I could not stand the idea of the closed room where he couldn’t see us and we couldn’t see him.

20160814_130324My solution, a modified dutch door. For those who may not be familiar with a dutch door, it is two half doors instead of one full door. In our case, I built one which is a little bigger than half out of four 2×4’s, a 2×6 and a piece of drywall left over from a renovation project. I built it large enough to use the existing bottom and middle hinge. That way the original door can be quickly reinstalled. A simple eye bolt holds it closed. Super D can’t climb it, he can see out and we can see him. While it isn’t the best looking door ever, it serves the purpose. In the event he would kick it or throw something at it, the drywall can easily be replaced. If he should fall against it, the drywall will give way and without seriously injuring him. If he was prone to fits or was violent at times, I would replace the drywall with a sheet of plywood.

How do you keep you roaming child in bed at night?

The question

by James, posted in Stuggles, Victories

We took a trip to the county fair this summer. The older boys and I wanted to see the garden tractor pull. We wandered around looking at the animals and exhibits, then settled into seats as the unlimited category finished their first pull. Super D was not too sure about the tractors, which was surprising because he loves tractors. All was going well until the unlimited class came up for a second pull.

Darlene decided to take the baby and Super D off the grandstands to get away from the noise, hoping Benjamin would go to sleep. All was well until the second tractor took off. Suddenly, Darlene was standing beside me yelling over the roar of the engine, “We have to go, NOW!” My first thought, we had a pullup malfunction. Lets face it, crap happens and often at inopportune times. The situation was far troubling than that. The noise was too much for Super D. All he could do was scream every time an engine roared to life.

We told the older boys we had to go home. Super D was done. Aaron, our 10-year-old, got quite upset because he wasn’t ready to go. Then it happened, he asked the question I feared would come one day.

Why is everything always about Daniel?

There it was. Six little words of frustration from a child. Six little words that cut like a knife. Six little words that affirmed what I had feared, no matter how hard we try, the other boys are not getting the attention they need and deserve.

Those six little words reminded me how important time was. They also drove home the point others had tried to make about the importance of time away from Daniel. That may sound a little harsh, but there is no other way to put it.

Those six little words told me something else. They screamed at me that I was failing as a father and a husband. I had let my family down. While I thought I was doing a decent job of spending time with everyone, I really was not. I had unintentionally made Daniel more important than everyone else. I had spent so much time with him in the last two years, I was having trouble seeing things as they really were. I had unintentionally sent a message to my boys and my wife that Super D mattered more than them.

I don’t think any of them would or could express it that way. Aaron expressed it this way a few weeks later. “You want us to go back to school because we stress you out.” Darlene admitted she felt the same way. In reality, I stressed myself out by not letting go and they took the brunt of it. I alienated those closest to me without realizing it.

Thoes six little words I had dreaded have become six of the greatest words ever spoken to me. They have rewritten a story line which should not have been written to begin with.

What a blessing it is to know, even though I dropped the ball as a father and husband, they love me and are quick to forgive.

Above all, love each other deeply, because love covers over a multitude of sins. – 1 Peter 4:8

First Day of Kindergarten

by James, posted in Stuggles, Victories

Daniel started kindergarten this week. For him, it brings some much needed routine and structure. For me it brings some needed rest, but it is also bittersweet.

Kindergarten is a big milestone for Super D. Thirty percent of children diagnosed with I.S. do not live past the age of 3 and many who do develop Lennox-Gastaut Syndrome, which is a devastating, untreatable form of epilepsy. While he shows signs of LGS, many of the typical signs are not there. It is a cause for celebration.

Even though we are celebrating the milestone, there is still some sadness which comes from it. We have always taken the boys to school for the first day of grade school. This has been so important to me that when I had jury duty, I convinced a federal judge to delay court so I could take Aaron to his first day of kindergarten. This year was different. This year we walked Super D to the bus when it pulled up at the end of the drive.

So, why the change? The answer is simple, we felt it was best for him.

Life, to a large extent, revolves around Super D. My tradition of taking the kids to school on the first day needed to be put aside to make the transition easier for Daniel. In reality, it is more than that. It is a subtle reminder that there is no “normal”.

The first day was a win. Daniel did really well. He really likes his teacher and para. So do we. This is the beginning of a new chapter in the story of Super D’s life, a new and great adventure in the making.

When I said, “My foot is slipping,” your unfailing love, Lord, supported me. When anxiety was great within me, your consolation brought me joy. – Psalm 94:18-19

Tips and Tricks: Managing Crowds

by James, posted in Tips and Tricks

I mentioned in a previous post that crowds are overwhelming for Super D. This can be an issue for many children with autism. If crowds are not the issue, roaming can be. The extreme sensory input from a large group of people can be terrifying when you can not process it. I have come to realize I struggle with it myself at times.

As we were preparing to make a 2,500 mile, week and a half trip to the Cleveland Clinic and Washington DC, we discussed this concern with the staff at the Lee Ann Britain Center. They suggested taking a wheel chair they had in the basement. This was the greatest thing we would ever do. The five point harness provided some much-needed support and confinement that allowed him to tolerate the people. Super D was able to sleep when he wanted and was safe when he had seizures. For us, the piece of mind it brought allowed us to relax and enjoy time with the kids. No fits, no wandering off and no seizures in the middle of crowded tourist spots.1054281454591053

If you are planing a big trip, or just a trip to the mall, it would be worth renting or borrowing a wheelchair. We ended up getting Super D his own. It looks like an oversized stroller and folds down for transport. Ours is the Convaid Cruiser. The best part, our insurance paid for it!

What tips and tricks have you used to manage crowds?

The Kindergarten Haircut

by James, posted in Victories

One of the things we had to accomplish before Super D’s first day in kindergarten was to get a hair cut. For any child this can be a challenge, but for a child with autism it can be a horrifying experience. I never know what a trip for a haircut will bring.

We have been very fortunate. In the last 4 years I can count the number of bad haircuts we have had on one hand. The worst one we ever had happened when I attempted to save some money and cut his hair at home. We managed to get it cut, however, it ended up being a bad experience. Lets just say, I learned my lesson.

Early on, we would take Super D to a chain that specialized in children’s cuts. They had pedal cars and power wheels on pedestals for the kids to sit in while getting their hair cut. For a child like Super D who loves steering wheels, this was heaven. At first it worked well to distract him from what was going on. As time went on, the novelty wore off.

We have been lucky enough to find stylists who have worked with special needs children before. This makes a huge difference in the experience. Having someone who has an idea of what it takes to beat the sensory overload is critical.

This trip went very well. The lady who cut his hair had previous experience with children, which helped. She also had a very quiet pair of clippers, which is a prerequisite for cutting Super D’s hair. She was trying so hard to get it perfect. Finally I let her know it was ok if it wasn’t perfect. In the grand scheme of things, a haircut that isn’t perfectly balanced is a minor issue.

I’m not sure she really understood the situation, but like most she didn’t ask. I hate that. I wish more people would ask those questions. When people ask about him, I have a chance to share our story, and more importantly, God’s story for Super D.

 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11