“Benny Can You Hear Me?”


Once settled in Charleston, our first order of business with regards to Ben was the hearing aid consult.  Dennis and I  both entered into this with some degree of hesitancy.  Not because we couldn’t accept that our son had a hearing impairment but because even after two ABR’s, which was  the best way to check the hearing of a non-verbal child, there was uncertainty on the part of the specialists about the extent of Ben’s hearing loss.  One thing we had learned thus far was that the rarity of Ben’s condition left everyone in “uncharted territory”.  While frustrating for two young parents who were only looking for definitive answers, in the end this was probably a good thing for Ben.  All of the uncertainty taught us to question often and put no limits on our expectations for Ben’s progress.  In the case of the hearing aids, though we were being told they would have a tremendous benefit toward Ben’s speech development we were seeing great strides in his receptive language without the aids.  It just didn’t seem like Ben was having trouble hearing us.  However,  we did not want to stand in the way of his growth in any way so we left it up to the experts to tell us what we needed to do.  The result, Ben was fitted with behind the ear hearing aids which he hated worse than the glasses.  The price tag was about eleven hundred dollars with little help from the insurance company.  Ben’s teachers, therapists, Dennis and I all strongly encouraged Ben to wear the hearing aids for about nine months thinking that he would get used to them if they were improving his hearing to the degree that we were being told.  That never happened

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.  We finally gave up and a few months later yet another hearing test graded Ben’s hearing in the normal range.  This was welcomed news but just added to our growing frustration with the so-called experts.

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Settling into our Life in Charleston


The next morning we met Ben’s new doctor for the first time, but it was as if he already knew Ben.  In addition to the volumes of medical records we had already sent to him, he had been in contact with MUSC hospital personnel about our visit the evening before.  Ben certainly had made himself known in short time he had been in Charleston.  The doctor’s work with the special needs community was quite well known, and it was obvious that his concern was not only with the child, but with the family.  He knew we were all in this together.  On this day he needed our help in determining why Ben had the seizures, and if there was a risk that this could happen again.  I was asked to recount  the whole story leading up to the seizures and together we would determine what might have been done differently.

His conclusion after looking at all of the test results from the hospital and after hearing my story was that there was no indication that the seizures were caused by anything other than the high fever.  The fact that Ben’s temperature spiked so suddenly was the one thing that really concerned him.  The fever spike had to be avoided in the future in order to assure that this never happened again.  In the future when Ben showed signs of illness; ie the low-grade fever, we needed to watch him closely and be more aggressive in treatment when the fever started to rise.  We needed to have Tylenol close at hand at all times.  Other than that, and another ear infection, it looked as though Ben had come through the whole episode relatively unscathed.  The doctor was not the least bit reluctant to tell us how lucky we were that things turned out so well

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After being sure that things were back to normal, Dennis returned to Richmond to finish his work and within a week was back with us permanently.  Thank goodness!  The next couple of months on the island were quite relaxing.  Though I was getting used to a new work environment, coming home to long walks on the beach each evening was a lifestyle we quickly embraced.

Happy Days on the Isle of Palms

My feelings at this point:  Content.  Though we still needed to deal with many issues regarding Ben’s health the least of  which was his hearing impairment., Dennis and
I both felt that we could “take a breather” for a short time until we were completely settled in Charleston.  This was very good for our mental and physical health.

 

 

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The Scariest Day of My Life


Finally, the day came when the temporary housing was available and we could all be together again. We were very fortunate that the condo in which we were staying was located on the Isle of Palms, which is a beach area on one of the barrier islands just outside of Charleston Harbor. This gave us an opportunity to find a house, while playing a little. Unfortunately the few months we were there were in the middle of the winter…but winters in Charleston are mild, and Dennis was able learn the fine art of surf fishing.

Dennis still had a few loose ends to tie up in Richmond so it was decided that he and Ben would come to Charleston with all the essentials for the next few months and then he alone would return to Richmond for about a week. This arrangement suited me well because the daycare situation had already been established and after being away for so long, I wanted some quality time alone with my little guy.

Ben’s first day at The Charles Webb Center started without a hitch. I woke him early to leave plenty of time to drive him into Charleston, drop him off, visit a while, and drive back across the Cooper River Bridge to where I worked in Mount Pleasant . Not a problem. Life was good! I remember being so happy that things were working out so well. Ben’s situation had been decided at least for the next couple of years, I was at a job that I absolutely loved, and I could tell Dennis was excited about the possibilities for his future. This jubilation lasted for about four hours. In the early afternoon I received a call from the daycare center that Ben was not feeling well and they were concerned that he was starting to run a fever. I quickly left work to pick him up, thinking that the major change he had gone through the last few days was taking its toll on him. Once I got him home and settled everything would be fine. He just needed a little “mommy time”. I took him straight to the condo and fixed some soup for the two of us for dinner. After eating he seemed to perk up a bit, but was running a low-grade fever and I was beginning to be concerned that he might have contracted another ear infection. It had been a while since he had been sick, so all I had for him was Baby Tylenol. While we had not yet met him, we had already sent Ben’s records to a pediatrician who had come very highly recommended by our new friends at The Charles Webb Center. I called and arranged to see him the next morning; just in case..

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. We settled in front of the television to rest for the evening, and I began to think that I was perhaps overreacting because Ben fell fast asleep.

At about 10 o’clock everything changed. What happened next; I had never before seen and have not seen since. Within a matter of minutes Ben became restless, woke up, and his fever just suddenly spiked. And then it happened; the seizures. Words cannot describe the feeling of sheer terror, mixed with helplessness one feels when they see this happening to their child. I was one hundred percent sure that I was going to lose Ben at that moment. I was watching my child die. Finally, I regained my composure enough to call 911. Luckily, our condo was about a block from the local fire department where the paramedics were housed. Unfortunately, my new next door neighbor was an elderly woman who was apparently a bit of a hypochondriac. It took me a precious few seconds to convince them that I was not her, but eventually my hysteria won them over and they realized I needed help immediately. It couldn’t have been more than a couple of minutes before they were there. They gave Ben a super dose of the Tylenol and the fever stabilized almost as quickly as it had spiked. They insisted on taking Ben to the hospital to be checked out and asked me to drive behind since they were almost certain he would not be admitted. While they returned to the fire station to get the ambulance, I called Dennis and proceeded to hysterically describe the events of the last half an hour. It must have had great impact on him, because within minutes he was in the car on his way to Charleston.

The drive behind the ambulance was very unsettling. I kept replaying the sight of Ben’s seizures in my head and each time it brought me closer to hyperventilation. I must have been a sight by the time we finally got to the hospital. The doctors in the emergency room seemed almost as concerned about me as they were about Ben. By this time he was tired and fussy, but nowhere near having another seizure. They did put him through a battery of tests and brain scans to see if the seizures had caused any damage, but everything seemed to check out fine. It is with this fact that I’m left so unbelievably thankful. Over the years I have met countless parents of children with special needs and have seen many cases where seizures left permanent consequences, not to mention the propensity for more episodes in the future. I say a prayer of thanks every time I think of this particular night because I know how different the result could have been.

It was early morning before Ben was finally released to go home. Even before we were settled in our beds Dennis came bursting through the door. It was at that point that I was finally able to release the emotions of that whole evening. It came in the form of uncontrollable sobs which lasted several minutes.

To this day I haven’t been able to figure out the timeline for that night so long ago. When I have counted forward the number of hours between my first conversation with Dennis and when he showed up at our apartment; it doesn’t add up. The speed with which he must have driven that night is just another thing that frightens me when I look back. I can’t even imagine what he must have endured during that long drive.

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Preparing for the Move


One good thing about the anesthesia was that it made Ben rather groggy for a few days. This meant that he slept through most of the worst part of his recovery. So once again the anticipation was much worse than the reality. We did have a few disputes about “eye-rubbing”, but were always able to come up with a quick distraction.

The next few weeks were spent preparing for the move to Charleston. I had to go almost immediately to get started with my new job. Dennis stayed behind to prepare the house for sale. This was a particularly difficult task because we had bought the house five years earlier as a “fixer-upper”. While we had put a great deal of work in the outside we had done nothing inside; not even paint. Dennis was tasked with painting the entire house. I was unable to take Ben with me because I was staying in a hotel until the company could make arrangements for temporary housing for our family. So Dennis was very busy working his last two weeks, painting, and caring for Ben. As you might imagine life was quite stressful for us during this period.

I was able to come home for a couple of days during this time to be present for our last round of doctors’ appointments. This was to collect our already massive file of records as well as get the ABR results and additional recommendations from the “professionals”. The ABR confirmed Ben’s hearing impairment and it was recommended that we get a hearing aid consult as soon as we were settled in Charleston….great. In addition, the physical therapist we had been working with also gave us a troubling recommendation

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. She felt that since Ben would be moving into a more educational setting that we should go ahead and buy a wheelchair for him. I still have the quote for a $3,500 Zippie Wheelchair with a candy red frame. The truth is, until that moment, it never occurred to me that Ben might never walk. She was very honest in her assessment of Ben. She just could not see how he would ever build the trunk strength to support the process of walking. Dennis and I both could not bring ourselves to agree with her. Besides, in 1991, $3,500 to us might as well had been one million dollars, and our insurance would not cover most of the cost. Instead, we decided to go with our “gut” feeling; that Ben would one day walk, and we purchased a Maclaren Major Special Needs Stroller which was one of the smartest purchases we’ve ever made and it was one tenth the cost of the wheelchair. The Maclaren Major Special Needs Stroller is an oversized stroller that provides side support, an abduction block, and an adjustable footrest. The best part is; it accommodates children up to 140 pounds. Because of Ben’s slight build, we are still able to use the stroller if we are someplace we know we will be doing a lot of walking. Obviously, this stroller is pretty substantial to have held up under twenty years of use.

My first few weeks in Charleston were very lonely. Looking back, it would have been a great opportunity to be a tourist (something we never really did while living there). However, I did not take advantage of that time because I was missing my guys way too much.

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Ben’s First Surgery


Our last big medical event in Richmond would be Ben’s eye surgery to correct the strabismus; and a big one it was. Ben’s first time under general anesthesia, and I was nervous. Not only was I concerned about the procedure itself, but the recovery would be challenging because I wasn’t sure how I was going to keep Ben from rubbing his eyes, a bad habit which still lingers today

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. It would be ten times worse than trying to keep him from taking off his glasses. Distraction and re-direction; two words that have been a big part of our vocabulary all of Ben’s life.

The day of the surgery we had to be at the hospital very early because they wanted Ben to be the first of the day. That way we would not be waiting around at the hospital for too long before the surgery. We could not have asked for a better doctor. She not only had a great rapport with Ben, but was able to make Dennis and me feel much more at ease. She had the confidence that a good surgeon must have, but it was minus the arrogance that you find in many. She sat with Ben on her lap as his sedative took effect, and was quite patient with Dennis and me as we took pictures, mainly as an outlet to relieve our nervousness. When they finally rolled Ben down the hall, I remember feeling like I was going to faint.

The whole process really did not take very long considering the ABR was conducted again at the end of procedure. Who knows, maybe I did faint and just slept through the whole thing. But before we knew it Ben was back in recovery and it was time to wait for him to wake up. This is when we found out that Ben does not like to wake up after being under general anesthesia. In fact it took him longer to wake up than the whole procedure took from start to finish! Dr. Brown said that things went well and the only complication was due to just another of Ben’s little quirks because of the trisomy-9. At the beginning they had some trouble intubating him because his vocal cords have an abnormal placement. This is a little fact that we have had to pass on to doctor’s over the years as Ben has had a few surgeries since this one. This first eye surgery was successful and no further treatments were necessary for the next few years. The ABR was conducted with no problem and we were due to find out the results in a few days. For now, I just needed to spend a few days watching Ben while his eyes healed.

Ben and his doctor before his surgery


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