Tag: autism

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

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

Thoughts on a Bad Day

by James, posted in Stuggles

Today was a rough day for Super D. He spent a large portion of the day sleeping or just laying around. If he was awake today, he looked to be in a trance. No expression, no emotion, nothing. His day was plagued by seizures. He had an above average number of them today.

Days like today make me wonder about many things. The big one is what caused it. It is possible the ADD medicine did it. Of course, he could be getting sick. That always brings on more seizures. This is one of our biggest frustrations. While we have not found any external triggers for Super D’s seizures, the internal ones we can not control reek havoc on his seizure threshold.

It also makes me wonder what goes through his little mind during these periods. Certainly some of the medicine can cause depression, but how do you know if a nonverbal child is depressed from time to time. Does he wonder why this is happening to him? Is he even aware of time and what is going on during these periods?

These are just the things that go through my mind when Super D has a bad day. I wish I had the answers, but of course my finite mind may not be able to handle the answers.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life?” – Matthew 6:25‭-‬27

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

Tips and Tricks

by James, posted in Tips and Tricks

Navigating life with a child with special needs can be a real challenge. There are so many ways to make life easier. Finding those ways can sometimes be difficult. The internet is full of ideas, half of which are sketchy at best.

In an effort to make deciphering the mess of information a little easier, the tips and tricks posts will share things we have tried that worked and some that didn’t. Some of these we have come up with on our own. A large number will have come from our time at the Lee Ann Britain Infant Development Center. I hope it will benefit my readers and make life a little easier.

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