Time most certainly flies! Autism Month is half way over! My daughter Camille is coming home from her first year of college in a week (what?!), Angelique has 7 weeks left of her sophomore year and Ben keeps repeating that next year he will be a senior… That one particularly gets me. How can I be so ancient? I guess the old saying is true, time does fly when you are having fun! Or when you are so busy , you sometimes don’t know which way is up? J
Despite the whirlwind that the past few years have been, I know that we have been so blessed. Ben has continued to grow into a handsome and clever young man.
Ben's quirks do not define him. I know he can do much more than we sometimes think. He plays on three teams each year: soccer, floor hockey and softball. His contributions are at times minimal but he tries very hard and several times he received the “Most Improved” Award at the end of the season.
Ben is also an artist. He loves Disney movies and I think that his eye for color comes from his love for master Walt himself. These are some of his latest masterpieces. I thought I’d share J
He’s a very prolific artist and he doesn’t like when I discard any of his drawings. But what to do? We’d be engulfed! He also carries a mini-magnadoodle with him at all times. It’s been a lifesaver when things gets “boring” for him in any given situation. And it’s also helped diffuse any tension or potential tantrums.
Art is magic! At our house we like paper, crayons, markers, colored pencils, whiteboard and erasers but we also go for playdough or moonsand and when the kids were little, the old watercolors and brushes! Try it, try it, you will like it J
An another Kingsbury Journal 2008 Entry:
November 1997 to July 1998
I replied : “I know, I can’t wait to meet with Dr. Senft. But at least if it is what you just said, then he isn’t autistic...” She stopped what she was doing and looked at me, one of those long meaningful glances that sort of want to tell you what you really don’t want to hear and chill you to the bone. I froze.
What could that look possibly mean? She wasn’t seriously alluding to Ben’s behavior having anything in common with Rain Man, right? (Okay, I know Rain Man is rated R but I’m a convert and I watched it before I joined the Church so I am off the hook, aren’t I?)
“Autism is ugly. It is unlovable and for the damned.” How far I have come in my thinking since that day…
Nonetheless if that’s what was wrong with Ben, we were in deep trouble. But I didn’t want to go crazy and check if that “pervasive development disorder” and autism had anything in common, because what would it change anyway? I needed a diagnosis, I needed to know about my little boy so we could get him more services. Incidentally, PDD and Autism are closely related, on the “ASD spectrum” as it has been determined since by the medical establishment.
For now, all we could do was to keep sending him to his special education preschool where they worked on his speech, self-help skills and attention span, and continue with his in-home occupational and special education sessions twice a week.
I learned so much about my son’s developmental delays during the ten months we had those sessions. It was difficult at times to see him struggle to learn things that my daughter Camille had mastered simply by observing the world around her and imitating. Ben had to really concentrate to retain any information, but he did try and he did learn , albeit ever so slowly.
During that time, Jennifer Harper, who was first compassionate service leader and then was called as the second counselor in the Relief Society of our ward, made sure that we were taken care of. She circulated a sign-up sheet during Relief Society on Sunday and sisters signed up to babysit my girls while I was attending Ben’s therapy sessions in our own living room!
The sisters would take the girls to the back yard or to their bedroom and played with them. Sometimes they brought their own children and made it a play date. I so appreciated their selfless service those two days each week. It meant so much to me that I could concentrate on Ben and his special needs knowing that my five year old and my six months old were well taken care of and above all were happy. I truly felt that those Relief Society sisters were “willing to bear my burdens that they may be light; yea and were willing to ... comfort those that stand in need of comfort...”(Mosiah 17:8-9)
These sisters of the Bethlehem ward that came to watch my daughters were truly “witnesses of God” and helped me in my time of need. I am still so grateful to them for their service to my little family.
The little Kingsbury family carried on. Life was still hard and I was still clinically depressed and a little more so after the occupational therapist told me what might be wrong with Ben. Thankfully Jennifer and our play dates for the kids were a ray of sunshine in my life. The kids played and in our minds we fixed our lives and what was wrong with the world at large with our grand ideas: If people in the world were not so selfish and would just follow the commandments, we’d all be much better off! That’s all our conversations pretty much boiled down to. Ah, to be young and so idealistic! ☺
I remember one conversation more vividly though. Jennifer was quoting Elder Neal A. Maxwell, one of my favorite General Authorities, and she told me she had just studied one of his talks where he says that God is the master remodeler of our lives. We think he wants to make a nice little cottage of us, when really He is building grand mansions out of us, knocking down walls and building grandiose dwellings out of all paltry lives. And as we change, grow and learn, the process is quite painful at times. Yes, I assume that knocking down walls would hurt if it was happening in my life. Wait! Maybe it is, right now! That conversation touched me. I would me more humble in the master’s hand.
Ben continued with idiosyncracies. He insisted on sleeping fully dressed so we switched to sweats pretty much all the time, as comfy as pajamas and you can still be seen in them, yeah! (He still sleeps in sweats now!) He booted Keith out of our bed and that was hard, as the baby already occupied the other side of the Queen size bed...
I was so exhausted caring for Ben and Angelique during the day that I couldn’t hear her at night and just kept her with me so she could help herself when she was hungry. I am telling you, those were not my finest moments. On top of it all Ben decided to bring a stick to bed so I was covered with bruises on my right side, where he slept. Swell. I was beyond exhausted.
Autism seemed to make more and more sense as the months passed. But I didn’t want to think about it. What was wonderful at this time in our lives was that Angelique was a baby. She was blossoming, cooing and babbling, smiling and being a joy. And lo and behold, Ben would start to mimic some of those babbling sounds too! They sounded like twins in a secret coded communication!
Camille was happy as a clam, being the Queen Bee of the group. Sure she was annoyed at times when the other two were crying, but she was young, only five years old, and she was the Queen. They were her subjects, she would just love them and make them part of her games anyway.
I’ll never forget the day she fell asleep with Angelique in her arms, or was it vice versa? No matter, they just adored each other. This unawareness on their part was pure bliss. I would give anything to go back to that. These days even Ben knows there’s something “wrong” with him, that something not quite the same as other boys is plaguing him.
A Near Tragedy
July 1998
One week in July 1998 Jennifer and I decided to organize a ward park day so we could have fun with all the kids of the church and their moms. We would get our kids together quite often but not so much with other families of the ward. Little did I know how tragic that outing would turn.
That morning I couldn’t shake an uneasy feeling, sort of a warning that things were not as they should and to be careful. Before we set off for the park, the children and I knelt in prayer and I fervently prayed that each would be watched over and protected. We got up from the prayer, gathered our things and I felt that we should say another prayer, so we knelt again and pleaded with the Lord that all would be well for us.
At Sand Island park in Bethlehem, we met up with Jennifer and her kids, and all the children, the ones that could walk anyway, quickly scattered on the jungle gym. It was a fairly large park but we had picked the area reserved for the younger crowd since I had Ben who was three. I scanned the park because I knew that a canal ran through it but I felt satisfied to see that a chain-linked fence seemed to run along its banks.
Not three minutes after we got there and Ben had started climbing on the equipment, I lost track of him. My heart sunk. Where was he? I started to call him. Jennifer and I started to look for him around the other play structures, we asked the other kids, and by then other moms from the ward had started to arrive. I was frantic, I kept calling him, to no avail, my voice was becoming more and more anxious, I could hear myself become panic-stricken and there was nothing I could do.
I saw Bridget Rivera, a mom from our ward, arrive with her children, she asked what color shirt Ben was wearing and I answered “red”. By then two other moms and their kids were also looking for Ben on the other side of the canal. Allison, our Primary president, took all the children with her and had them sit with her.
I was on the other side of the park when Bridget screamed that she had spotted him. I ran as fast as I could, I could tell by her voice that it wasn’t great news. I got to a little bridge that crossed over the canal, Allison said: “He’s in the water, Bridget is going after him, he’s OK, he’s treading water!”
Treading water? Is she insane? He doesn’t know how to do that! I don’t know how I got down about ten feet into the canal –across the bridge there was no fence along the canal– but I did and swam up to Bridget who had already reached Ben. The current was much quicker than I had thought at first, I don’t know how Bridget had reached him so fast...
Bridget had Ben in her arms and she handed him to me, he was crying and very upset but very much alive! How grateful I was to Bridget for spotting him floating face down in the water, getting to him before the current swept him much farther and giving me back my son! I was completely in shock over what had just happened in a few minutes. Terrified and crying, both Ben and I were helped out of that canal by Bridget. We found an ambulance that had been called by one of the moms, waiting for us, to check Ben out and take him to the hospital.
After we returned from the ER and Ben was given an absolutely clean bill of health and the doctors were sure his lungs hadn’t suffered any damage at all –an absolute miracle since Bridget said he spit up mucus and blood after she picked him up, and his complexion was gray–, we went back home where other miracles were awaiting us.
Ben fell asleep on the living room couch, exhausted from his escapade I was sure. Everyone was subdued, calm. I wrote it up to the absolutely awful morning we had all suffered. I prayed my heartfelt thanks to Heavenly Father for sparing my little boy, for sparing me. Ben would have been okay, he would have returned straight to Him. I, on the other hand, would have been a horrible mess and I am not sure if I could have survived his loss. I felt so guilty already for having let that accident happen. But he was so quick, so fast to wander off.
That afternoon melted into evening, the calm and peace remained with us. I felt strangely comforted. We had suffered such a traumatic experience and yet my little boy was calmer than he had ever been since his younger sister’s birth. I thought, “Well, maybe he’s still somewhat dazed”. But the peace was almost otherworldly and it stayed with us for almost a week after Ben’s accident.
At one point, I was seating in the living room with Ben and his eyes were focused on something behind me, his beautiful little face was so peaceful and serene. I turned slightly and from the corner of my eye caught a movement of something white, long and flowing. Could it be? Could it be that a Heavenly being was ministering to my Benjamin after his terrible ordeal in the creek?
After all, Ben had never been so satisfied to be on this Earth, ever. Hands down. He wasn’t fussing anymore, wouldn’t ask to be rocked as usual, would just stare into space happy as a clam, seeming to communicate with someone that he was very happy to see again.
It is during that blessed week that he also said his first very clear words: “ Come. Back. Here.” And all heck broke lose yet again. It broke my heart in a million pieces. His angel must have left him that day.
Let me explain what happened before he spoke that day. We were driving somewhere and I was keeping an eye on him from the rear view mirror. I was so astonished with the changes in his demeanor, I couldn’t get enough of seeing his sweet face so serene and peaceful. When all of a sudden, a cloud came over his features and his eyes started to dart from side to side, looking for something that evidently had gone missing. He got so disturbed that he spoke the fateful three words, ever so clearly: “Come back here.” It had been a week since the near drowning; the comforting mission of the angel must have come to a close. And the season of serenity for the Kingsbury family had come to a screeching halt as well, for Benjamin couldn’t be happy on the Earth yet again.
Later Bridget shared with me that that fateful day in the canal she felt that she hadn’t been alone to save Ben. She had felt guided multiple times by the Holy Ghost, telling her exactly where to look first to find him and what to do for Benjamin once she reached him. The Holy Spirit had told her how to sit him up on her knee and squeeze his chest so the water he had swallowed could be expelled. She had felt protected while she was going after him in that dirty canal water and she was comforted that all would be well. I am so grateful to her for saving Benjamin, if it hadn’t been for Bridget, I don’t know if Ben would be among us today.
Since that enormously scary experience at Sand Island park in Bethlehem, Camille and I have suffered from post-traumatic stress disorder. Every time Ben wanders off, we go into some kind of shock. It has been ten years and it doesn’t seem to get any easier for us not know where he is at all times. I think Ben picks up on our vibes because he seems to love giving us cardiac arrest by disappearing every now and then after church or in a crowded store. It is far from humourous when you lose all sensation in your arms and your heart actually seems to slow to a complete stop.
Maybe it gives Ben some sort of joy, to be so difficult, when he can’t be happy here on earth, why should others be either? I am only saying this tongue in cheek, I know he is not doing this on purpose. Life is rough and we have tribulations to help us learn and grow. John 16:33 says: “...in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.” That is the real reason, so we might recognize our Lord’s hand in our life, when He blesses us and upholds us. Heavenly father has also sent us here to love. And we love Ben.
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