Alex Goes to the Dentist

Does anyone actually like going to the dentist? No one I know! Alex’s first dental experience was a complete disaster. But truthfully, I didn’t expect anything different; everything is harder when autism comes into play. I don’t think he understood what was happening or what we wanted him to do, i.e., sit still and open his mouth. We made several attempts for the dentist to look in his mouth but he just wouldn’t hold still. There I was, leaning over in an awkward position, holding him down in the dentist chair. He was screaming, crying, and thrashing around; I was practically dripping with sweat and on the verge of tears myself. By the end of the appointment, Alex was huddled on the floor in a corner, sobbing and exhausted. The doctor had not been able to check Alex’s teeth, let alone do any cleaning. In order to try again, we set up another appointment and the dentist prescribed a drug called chloral hydrate which we were to give him approximately a half hour before. It was a chore to get it into him, but somehow we did it. It worked! He was totally sedated by the time we arrived and the dentist was able to check his teeth and clean them. From then on, we went to the pharmacy for a small bottle of choloral hydrate to use before each visit.

Alex’s love for fruit snacks certainly did no favors for his teeth! That, combined with the difficulty of brushing his teeth adequately, made for an inordinate amount of cavities. (At age 28, he still cannot brush his own teeth; he will simply suck on the brush. So, we have to do it for him. Every day. Twice a day.) I also suspect we have a weak enamel gene in our family. My husband and I both had quite a few cavities growing up, and of our six children, several had lots of caries while another child­­ who was eating the same exact foods ­­had none at all!

Alex has had extensive dental work since he was small; not just cavities, but caps and extractions too. Upon moving to VT, we were extremely apprehensive about locating a dentist who might be willing and able to work with us and Alex. Would they want to use chloral hydrate? Some other drug? Would it be safe? I ended up calling quite a few places before finding a pediatric dental practice that seemed appropriate for our situation.

It turned out to be a great fit for Alex. Dr. B was very gentle and patient, as were all the staff. I have always felt bad for any doctors, nurses, and dentists treating my son since there is no way for them to know if he is feeling pain or discomfort. Novocaine taking effect yet? Does that hurt? He can’t tell us. So, Dr. B’s approach was to save up a lot of cavities, extractions, etc., then do all the work at once at the “Pain Free” unit at a major New England hospital. We took Alex there 3 or 4 times over the years.

While Alex probably did not enjoy these outings, I confess that my husband and I kind of did! Upon walking into the hospital, it seemed more like a mall: restaurants, shops, and wonderful spaces to sit and do nothing . . . but wait. Low lighting, people speaking in hushed tones, it felt relaxing! Looking back now, perhaps it’s weird how much fun I thought those trips were.

To be there at 7 am, we had to leave home at 6, which meant getting up at 4:30­ish. Our older children must have looked after the younger ones because I don’t remember enlisting the help of anyone outside our family. When we arrived, we’d go directly to the “Pain Free” unit and check Alex in. Paul and I stayed for a few minutes until all was ready for them to administer the general anesthesia. It was our cue to leave when Dr. B said, “Okay Mom, give him a kiss and say ‘I love you’.” I’d kiss his forehead and then Paul and I would go to one of their family waiting rooms which were equipped with a TV, refrigerator, microwave, comfortable sofas, and table and chairs. They gave us a beeper so they could summon us back when the dental work was completed, or I suppose, in case something went wrong and they needed us there ASAP.

At that point we could sit and read or watch TV. One time I brought a big craft bag and cropped photos for a scrapbook album. After awhile we’d go downstairs and bring back some cocoa and pastries, or sandwiches and juice. On our last trip there, I remember that we watched the funeral of former President Ronald Reagan. Sometimes other waiting parents would come into the room for a short time, but usually we had it to ourselves. When the procedure was done, they’d beep us and we would go to the recovery area to sit with Alex while he was waking up. He always seemed so confused and disoriented. I’d wipe off the dried blood from around his mouth. They let him watch Disney movies and gave him popsicles, so that part he liked.

When Alex turned 21 years old, the pediatric dentist said he wouldn’t be able to take care of him any longer. (We were grateful that he’d continued to treat him for as long as he did!) The last few years, it was starting to feel strange bringing a 6 ­foot tall, 180 lb. man to an office where all the other patients were preschoolers, elementary­-age children, and an occasional teenager. The little kids would stare at him, confused; their parents would glance sideways, out of curiosity. So Alex became a patient of our regular family dentist. After so many years with Dr. B, Alex has actually become quite a good patient in the dentist’s chair even without the chloral hydrate. Even the smallest of accomplishments when raising an autistic child should be celebrated.

 

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A Long Ago Prayer

Once when I was visiting with a friend, I shared with her an experience I’d had some years earlier. It was of a spiritual nature (I’d even call it sacred) amd so much so that I had not previously shared it with anyone. However, this friend was going through a difficult time in her life that made me feel as though it would be helpful to her if I shared this experience.

I told her about the memory I have of praying about my son Alex when I suddenly felt engulfed by hopelessness and sadness. I think he was probably about four years old. By this time the reality of his diagnosis had become clear to us. We were feeling quite apprehensive about all the unknowns and uncertaintities we would be facing in the future due to his autism. I was still grappling with the pain and sorrow that come when you realize you need to let go of the promise and dreams of the child you thought you had. You know, the child that would go to school in regular classes like all the other kids, the one who’d have friends and all go to each other’s birthday parties, play baseball or be in the band, who’d go to college, have jobs, get married, buy a house, and ultimately give me beautiful little grand-babies to hold, sign to, read to, and rock in my rocking chair.

Suddenly your dreams, this future you’ve envisioned, is ripped from you. In this particular instance, though, I was not concentrating on my pain, but Alex’s. I was not looking at his life from my perspective, but his. What would it be like not to have any real friends? Not be picked, ever, to be on someone’s team for kickball at recess? Having EVERYTHING be so hard, all the time. Not even being able to say “My stomach hurts” or “I have a headache.” Not be able to tell me what he’s thinking or feeling, what he believes or dreams about. Not be able to tell me when he’s nervous or anxious or afraid. Is he ever afraid? Of what? I don’t know! Not be able to tell me a kid on the bus bullied him. Not be able to tell me and his dad what he wants for Christmas or his next birthday. Not be able to say, “Good night, Mom, I love you.”

So I was praying and pouring out my heart to God, voicing my concerns and pain at what Alex would face in his life. I though of all the opportunities he’d miss, all the experiences he’d never have. In thinking of how hard, how painful, life might end up being for him, I cried out in anguish to God, “Don’t you love him?” And the answer that instantaneously came to my mind was, “Of course I do . . . that’s why I sent him to you.”

I was immediately humbled. I realized the great trust God was showing by entrusting this sweet, vulnerable spirit to my nurturing care. I actually felt I’d been granted a great privilege to be Alex’s mother here on earth. Each time I recalled my questioning plea and God’s comforting answer, I felt that God was aware of us­­, me, Alex, all of us.

That is not the end of this story, however. A few years after sharing that experience with my friend, I happened to be skimming through one of my old journals. I came across the entry where I’d recorded that prayer experience. The thing that totally shocked me was this: I had not been praying about Alex, but about one of my other children! This son had been struggling to keep up in his schoolwork and having a difficult time with some other behavioral issues, though nothing really serious. I was so surprised that that prayer was in fact about this other son, not about Alex at all. For years I’d been cherishing that memory that I thought was about Alex. Funny, and strange, how it became transposed in my head from one son to another.

The truth is that God DID send me both of these exceptional spirits. That’s how I feel about all of my children, that they truly are extraordinary people. I am so glad to be the mother of each one of them. That is one reason I always work so hard to do the very best I can; I want to show God my gratitude for the great gifts he has given me, not just in sending Alex to be a part of my family, but in sending me the six wonderful children I have.

Inside the Option Playroom

After I got the other kids off to school, Rose and I would go into the playroom with Alex. We’d have pretzels, fruit snacks, crackers, fruit, water, juice, bread and peanut butter and jelly for making sandwiches for lunch. Toys, books, puzzles, blocks, and food were up high on shelves so that he’d have to look at us, make a sound, and either point or make some gesture to get us to help him get what he wanted. We wanted him to have to communicate with us. If he made any sounds at all, we’d repeat it back to him, and turn it into a word to model to him that sounds formed words and words could get you things you wanted!

For example, if he looked toward the pretzels and said, “pre-duh”, we’d excitedly repeat that and then say “pret-zel”, slowly and distinctly pronouncing the word, while using exaggerated gestures and over-the-top excitement in our body language and facial expressions. We wanted to make communication fun, rewarding, and meaningful to him, so that he’d want to repeat the interaction and hopefully have a desire to continue using words.

If he just sat on the floor and stared, we’d sit next to him, staring. If he ran in circles or spun himself dizzy, we did it too. We had a full-length mirror and he spent a lot of time looking at himself and making funny  faces. It was not an interactive, engaging silliness; it was only between him and his reflection.  Much of the time it seemed he was not even aware of our presence. Sometimes he would do this thing where he shuffled his feet back and forth which we believed he was doing in an imitation of the character Goofy in a Disney cartoon. Out of the playroom, he loved to watch Disney cartoons on VHS tapes which he would stop and rewind so he could watch certain parts over and over and over again. Particularly, he loved scenes of the characters running, jumping, dancing, or doing other physical activities.

One of my greatest fears in there was when he would go to the door and try to open it to leave. Then I would feel really bad and think “Oh, he hates it in here” and I would have to try to get him interested in something. fortunately, most of the time he seemed quite content to stay in there and play.

0607161633a
Alex watching Rose’s feet as she runs.

When the older kids were at school and my husband was at work, Rose would have to be in the playroom with me and Alex. She’d play by herself or sometimes run around with her brother. He’d nudge her back and say “Run Rose, run.” Of course it didn’t actually sound like “Run Rose, run”, but we all understood what he was saying. Then he would run behind her, giggling. They’d go around and around, sometimes him chasing her, sometimes the other way around. Later in Vermont, they played the same game in the playroom and even down our long hallway. It was one of the few games that he ever initiated on his own. That, and asking me to tickle him.

We had a couple of volunteers who came to work in the room with Alex. We had a college student and two moms. All were wonderful. I wasn’t much good at doing the feedback, I felt. I was always horribly uncomfortable doing it. I didn’t want to seem like I was criticizing or saying they weren’t doing it “right”. I was supposed to “dialog” with them in order to find out why they were or were not comfortable copying Alex or responding to his requests (verbal and non-verbal) for food, toys, games, and engaging him in various activities. The Option dialoging process was supposed to explore how they felt–did they feel scared or timid or shy or uncertain or confused or what? An older woman who learned about our program wanted to volunteer. After observing, she decided she wouldn’t physically be up to all the jumping around, getting up and down from the floor, etc. So she came to tend Rose while I was in the room with Alex. One mom brought her three-year-old son with her. He played with Rose and they became great playmates.

Since he couldn’t tell us, ultimately I don’t know how doing this program affected Alex. I’d like to think it helped him learn how to interact with other humans. His increase in eye contact was a direct result, I believe. He developed some play skills that he’d had, then lost, then regained. I felt like I was doing something special for him. I didn’t want this to be one of those things that in twenty years I’d be thinking, “Gee, I really wish I had tried doing that Option home program when he was 6.” All in all, I think it was a positive thing. I’ve kept in touch with two of the original volunteers for over twenty years now, so it must have meant something special to them, too.

We had a pile of blankets and pillows (there was a huge mat covering the entire floor) and sometimes he’d burrow under everything. Once in awhile he’d fall asleep. There were times he’d just be quiet and I’d just sit patiently and give him a little rest time before trying to engage him in more active play or another activity. At these times, I would marvel at what a beautiful little child he was. Although the sadness of “what might have been” never leaves me, at some point I did accept that I didn’t need him to change for me to be happy. I always hoped he’d someday be able to talk to me but that hasn’t happened.

I remember one very special experience I had in the playroom with Alex. Since age 3, he had been obsessed with letters and began spelling words with magnetic letters on a cookie sheet. Consequently, in the playroom we played a lot with letter blocks and letter tiles and magnetic letters and writing letters on paper. He’d dictate, letter by letter, and I would write long, long lists of the names of Disney animators, artists, directors, background, and music people from the movie credits. When he got older, he would write and then typed the names himself, but he seemed to enjoy watching me write. One day I was writing letters and for some reason I was also writing numbers. My thought process began: if there are upper- and lower-case letters, why not upper- and lower-case numerals? I started imagining what a lower case “2” or “5” might look like and I suddenly got very excited about trying to design these and in my mind played around with many different ideas. For a few moments, everything else just seemed to fade away until all that seemed important was me, and the thoughts in my brain. It was a strange sensation. With a shock I suddenly wondered, is this how Alex feels?–all the time?! Maybe the world inside himself, inside his mind, is so engrossing and so fascinating that it makes it hard for him to attend to our world. I guess I’ll never know.

The Option Institute (2nd Part of Going to Neptune)

We took Alex out of the school in Neptune because we had determined that we would do a home program based on the Option Institute model. I remember sitting in the foyer at our church one Sunday when a woman approached me and asked if I had heard of the Option Institute. I had not. So, as this was before everyone had internet access, I either telephoned or wrote a letter to get more information. I also went to the public library and checked out a book entitled “Son Rise” by Barry Neil Kaufman, who founded the Option Institute along with his wife, Susie.

In the ’70s, the Kaufmans had two little girls and a baby boy. When their son started showing autistic-like behaviors, they began searching for answers. One professional even told them to put their child in a mental institution and forget about him. To them, this was an unacceptable choice. They decided to try something different. They began a home-based program in which they spent every waking hour interacting with their son in a special playroom. This room was designed to be a calming, low-stimulation environment, yet have everything they might need to play and interact with their son. Their desire was to draw him out by going into his world gently and on their son’s terms.  Their goal was to invite him lovingly into our world without overwhelming or bombarding him with stimuli and demands.

They changed his diet to one of whole, natural, organic foods, eliminating highly processed, refined, pre-packaged foods. Susie and her husband took turns playing with and teaching their son. They hired people to help with their other children as well as with household duties. Gradually their son ceased to be autistic. They founded the Option Institute in Sheffield, MA, to teach other families how to replicate their program.

As with many other things we’d tried, I did not want to be sitting here 25 years later, thinking, “Gee, I wish I had tried [insert miracle possibility here].”And so Paul and I decided to give it a try. The biggest issue was the price tag for a week at Option. It was around $6,000. I talked to people at the Institute for advice on how to go about fund-raising. This was probably the hardest thing I’d ever done at that point in my life. The fund-raising consultant lady at Option gave me the name and number of another mother who had fund-raised to attend the week-long program, so I called her. I was really struggling with the whole idea of not just trying to find the courage to do this home program, but also fund-raise $6,000. I am, at heart, a very quiet and shy person, and when I voiced my fears and hesitation over the fund-raising, she bluntly said, “Well, what’s stopping you?” I have to say it really hurt.

We did various things to raise the money: posting letters in the newspaper (just flat out asking for money), asking a few churches for donations, asking family members for money, going to a bazaar with craft items that friends made and donated for us to sell. And through all that, we raised the $6,000 we needed; it seemed like a miracle to me.

It was a wonderful experience. The Kaufmans and everyone at the Option Institute was very kind, supportive, energetic, and fun! We had our own little house to live in with a fantastic playroom where we and their staff took turns going in with Alex, then took turns giving and receiving feedback on how to do a better job the next session. Everyone there really fussed over us; the attention was marvelous. The food at the cafeteria was all natural and organic, with many vegetarian choices. The setting in the Berkshire mountains was beautiful and peaceful.

In addition to the instruction on how to work with Alex and how to recruit and work with the volunteers who would help us in our home program, we had something called “personal dialogues.” This involved meeting one-on-one with one of the staff who’d been specially trained to do this “dialoguing”. Essentially it was a conversation, almost like a therapy session, in which the staff member would ask us probing questions to help us uncover our beliefs. The gist was that all of our behavior comes back to beliefs that we hold, whether we are even aware of those beliefs or not. It was very enlightening.

When our week was done there, we had a tearful good-bye with the staff–we’d grown very close through all the hours of close interactions–and drove home. We were excited to begin our own home-based Option program. We had to fix up our “playroom”, and find some volunteers. We were very fortunate in finding some fantastic people; I still keep in touch with several of them, even all these years later. I had high hopes of reaching through to Alex. Would we be able to “cure” his autism? In my naivete, I believed it was possible.

We ran our home program for a year in New Jersey and another year after moving to Vermont. One of the biggest headaches in Vermont was dealing with the school district, trying to get them to help with any funding for our program. The only thing they were willing to offer us was speech and language services once a week at the elementary school.

Some months after beginning our program, we had a member of the Option Institute staff come to our home in NJ for a weekend program where he observed us and our volunteers working in our playroom (complete with two-way mirror) with Alex, and then gave us feedback. He observed me giving feedback to our volunteers and then gave me feedback on my feedback! I even returned to Option for an advanced training week after we’d moved to Vermont.

Although Alex had made some gains, he was still clearly autistic and, in my opinion, not going to be not autistic at any point. I guess I just became disenchanted with the whole idea, so I ended up enrolling him back in public school, and in the fall of 1997, at the age of 9 1/2, he began third grade. Would he be the same person he is now if we had not done the home program? I’ll never know. Do I regret doing the Option program? Not for one minute.

Going to Neptune

0607161654bBack in the olden days–circa 1991–educators did not yet believe in inclusion for autistic children. Not the ones in NJ, anyway. When Alex was diagnosed at age 3, we were strongly encouraged to put him into a preschool program. We were okay with that decision; there was a public preschool program (half-day, mornings) for developmentally delayed, special needs children at the elementary school around the corner, one block from our home. Our three older children were enrolled there.

I was a stay-at-home mom and our other children were home with me until they went to kindergarten, so this was hard for me to let him go so soon. I was worried about so many things, especially because this was Alex.

The summer before he started, I worked very hard to get him potty-trained. We were successful with the urinating part, at least. I did NOT want to send him to “school” wearing diapers! I felt like that would have reflected badly on me as a mom. Shows you how young and naive I was. Luckily, he made it through the morning hours with no BM’s.

However, every afternoon/evening he would have these sloppy, diarrhea-like BM’s. It ran down his legs into his socks and shoes, requiring taking off everything and putting him in the bathtub to get him clean, and then putting fresh clothes on him. Knowing what I know now, I realize he must have had a lactose intolerance or some other food allergy to cause this. Anyway, he was not completely bowel trained until he was 6 years old. As we used cloth diapers back in the stone age (Pampers and Luvs existed, we just couldn’t afford them), when he grew too big and I could no longer make two diapers fit him, we began diapering him with receiving blankets at bedtime. Ahh, memories. That also makes me recall that we used to diaper pin his shirt to his pants, one in the front and one in the back, to keep him from taking everything off and running around au naturelle.

He did well at pre-school, keeping his clothes on and peeing in the potty there, except for constantly attempting to climb up whatever was the highest piece of furniture in the room. It drove his teachers crazy. Although it was difficult at first, he got used to me leaving him. He played with toys, just not with any of the other children. With lots of prompting, he participated in circle time, and whatever activities were going on. They taught him a few signs: food, more, help, later, please. Probably the best thing was that it was a few hours of respite for me, allowing me a much needed break from the constant monitoring of where he was and what he was doing every minute that he was awake.

He attended pre-school at the elementary school for two years. At the end of that time, we were directed to take him to a neurologist (again) for a diagnosis (again), for purposes of determining what special education services he would receive when he turned five. The experience with this doctor was different from the original neurologist we’d seen. Whereas the first one barely looked at Alex and seemed to base his determination of “PDD-NOS” (pervasive developmental disorder–not otherwise specified) almost solely on my answers to his limited questions, this second doctor actually spent an hour observing how Alex behaved in a room with toys, games, books, and puzzles. She ultimately labeled Alex as having “classic autism”.

So with that, we went to the IEP meeting, and guess what? They could not handle a child with “classic autism” at our local elementary school. We were informed that the school district would pay for him to attend a special school in Neptune, NJ–over an hour’s drive from our home! I was flabbergasted. They actually wanted me to send my five-year-old child who would not even be able to tell me about his day, to ride a bus an hour each way, to Neptune?!

It took some getting used to the idea. Was this really the best thing for him? I supposed it was a good school; it was staffed with “special education” teachers, after all. Maybe it really would help him–get him to talk, to tie his shoes, to play with other kids, write his name, learn how to do all the things that little kids do that he wasn’t doing. I felt confused and distressed. Seeing no other viable alternative at the time, my husband and I decided to send him to Neptune.

The first two months we weren’t seeing astounding progress or anything, but he seemed to be okay with getting on the bus each morning, so I figured that must mean something. Plus, I’d get little notes from the teachers telling me what was going on. Things were going alright until the day the school nurse called. She told me Alex was sick and that I needed to come pick him up right away. Oh, great. We had one car, which my husband had taken to work. For some reason, he couldn’t leave work and come home to let me use the car. I phoned several friends before I found one who was available and willing to drive me (and my youngest, Rose) the 100-mile round trip to get Alex. I felt like crying all the way there. I was upset about inconveniencing my friend this way, thinking about Alex being sick, and so far away, and worrying about both of us getting back home in time for our children to return from school. It was a horrible experience.

That was the day I started to consider seriously doing a home program for him. Alex had started at the Neptune school in September. In January we pulled him out of school and I began his intensive one-on-one Option home program. He had his sixth birthday that month.

I liked having him at home with me. It never seemed right to have such a young, vulnerable child have to go so far away from home to find the “least restrictive environment” (one of the terms the school people liked to throw around). Having him home was the least restrictive environment, in my opinion.