Category: Victories

Return Of The Personality

by James, posted in Victories

After a long few weeks, we have had a bit of a breakthrough. Over the last week, Super D has only had two big seizures! That is huge progress. I wish I could say for sure what it is that caused this good turn.

The biggest win of the last week came on Saturday afternoon. We made the decision to skip Daniel’s ADD medicine. We really did not know what would happen, but we were 20161015_143957running low, so why not? This simple decision was a huge blessing.

Daniel started the day off a little chaotic. But, that is to be expected without the medicine. The real blessing came later in the day. Josh had a soccer game that afternoon. Daniel does not really enjoy sitting at the games, but this time was different. He was being very silly. He sat in his chair and poked me. Then, when I tickled him, he smiled and even had a little laugh!

Now, that may not seem like such a big deal. For Super D, it is huge. The medicine has destroyed his personality. He rarely smiles and I have not heard him laugh in two months. For a brief time, I had my little boy back.

Of course, the constant attempts to gag himself also returned. So, we went back to the medicine Sunday.

We are in the process of switching the ADD medicine. Hopefully we will be able to control the impulsivity, yet still retain his personality.

Days like Saturday give us hope. They provide a physical reminder that God is good and has not forsaken us. Days like that recharge the batteries, so to speak, making it easier to press on.

One day, we will have him back for good. Until then, we will persevere.

Don’t be deceived, my dear brothers and sisters. Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. He chose to give us birth through the word of truth, that we might be a kind of first fruits of all he created. – James 1:16-18

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

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

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

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

Our Story

by James, posted in Stuggles, Uncategorized, Victories

Daniel, affectionately known as Super D, is the third of our four boys. Our older boys developed normally and are healthy. Everything started out just fine with Super D. As time went on he got a little behind on milestones and was late walking and talking. It was not enough that we or the doctors were really concerned. Looking back, we can see the trouble starting as early as 10 months.

Then when Super D was 15 months old he was diagnosed with infantile spasms. Infantile spasms are a form of epilepsy which typically affects children under the age one, but a few, as in Daniel’s case, as late as two years old. The typical onset age of I.S. is around 4 months. The effects of the seizures on a developing brain are astronomical.

In Super D’s case, the activity is all over his brain. For him, the activity manifests itself in the form of a drop seizure. At the worst he was having 30 or more seizures a day. His were violent enough, one day I saw him flip head over heals from a seizure.

Now, 4 1/2 years later his seizures are better. We are down to a couple a day on average. When he has good days, we don’t have any major seizures, even though he will have 4 or 5 minor ones. When he has bad days, we have 5 or 6 major seizures and a few minor ones. We have exhausted all the “safe” drugs and are now on to the ones that have more side effects. This has led us to add more medicine to control the side affects of the seizure medicine. Crazy, right? But that is life with I.S.

Developmentally, Super D is at a 2-3 year old level in most things. Communication is the one exception. He is non-verbal and has limited signs. The seizures affect his short-term memory, making learning difficult. We also think the worst of the seizures are concentrated in the speech area of the brain, although the EEG shows activity over all of his brain.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. –  Matthew 11:28-30