Tag: special needs

Why Super D?

by James, posted in Uncategorized

.facebook_1470009419901I took this picture of Daniel several years ago as we were preparing to go trick or treating. It is one of my favorite pictures of Daniel and where the nickname Super D came from.

Daniel is a super hero in my book. At 5 years old, he has endured more than most adults. From spinal taps, to spending multiple days hooked up to an EEG, to the nursing students who tried for an hour to draw blood, this little boy has been put through hell in an attempt to control the seizures. Yet he endures.

The medicine and the seizures have taken my little boy from me. There was a period early on where he never smiled. Even now, smiles are few and far between. Moments of clarity bring great strides in his speech and development, only to be wiped out the next bad seizure day. Yet he endures.

I heard him laugh a couple of weeks ago. That was the first time we had heard a real laugh in over a year. I don’t know if he doesn’t find joy in things or if the seizures and medicine won’t let him. Yet he endures.

He was diagnosed with autism. Crowds are overwhelming for him. The sensory issues keep him from being able to walk and hold our hands. He gets overwhelmed and throws himself down. We have a wheelchair to provide some comfort for him while we out. So he flaps, kicks and grabs at things. Or he is calm and sucks his thumb. People stare and cast judgemental glances. I brace myself for their sharp tongue, which, thankfully, has not come, and try not scream at them to mind their own business. Yet he endures.

The behavior issues caused by the seizures and the seizure medicine often leave Super D going from one thing to another, making a mess and getting into things. I pray for God’s grace and His guidance as I chase him around the house. As soon as one mess is clean, he has created another. Before long I lose my vertical focus and my patience. Yet he endures.

If Daniel isn’t a super hero, I don’t know what one is.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who fives generously to all without finding fault, and it will be given to you. –  James 1:2-5

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