2. My Diary About Ben’s Birth To Diagnosis At Age Four


By: Carole Norman Scott

BEN’S BABYHOOD–SOME WORRIES EVEN THEN

 Ben at birth–seemingly “normal” in every way!

July 4th, 1962–Two little red pills and a “hypo” (at the doctor’s orders to help me through the pain of labor–that’s how they did it back then) soon sent me into oblivion. So much so, that I was not even aware that little Benjamin was born only two hours after I arrived at the hospital. I did not get to see him breathe his first breath, or to hold him close to me and reassure him of my love. He was on his own as he was circumcised, and was allowed to cry heartily for several hours thereafter, his arms flailing the air; shaking his fists in protest! I was told that his face and body were flushed crimson (like the cap of bright red hair he sported at birth), as he voiced his displeasure at the proceedings. He was a firecracker; both by date of birth, and by temperament!

I gleaned from these reports that my husband and the expectant grandparents furnished, that Ben did not seem too pleased with leaving the warmth and security he had enjoyed for the past nine months and entering this cold, cruel world he would be expected to call home. (This was long before the era of husband and family being included so readily in the birthing process. They were forced to sit in the waiting room and wonder what was happening.) I finally “came to” enough to snuggle him to me, and to check him over. I was delighted to find that he was as beautiful and perfectly formed as I had anticipated. I now had one son and one daughter. I was off to a rousing start.

3 months – You are such a good baby, Ben. You hardly ever cry…you just eat, sleep, and entertain yourself with your birdies mobile and cradle gym. We hardly know you’re around. You grin every time anyone even looks at you, and you cackle out loud when we play pat-a-cake with you.

9 months–When you were nine months old, your cousin Stephen was born. Your Aunt Shirley’s two older children came to stay with us as she recuperated from her delivery. Melinda was nine, Billy, six, and your sister Maureen, was three. They had great fun playing together, and Melinda loved to play house with you. Somehow, being with the other children made me more aware of how your development was progressing. I had written in your baby book: “At nine months, you like to stand up in your jump-chair, but so far you haven’t made any attempt at all to raise yourself to a sitting position, or to crawl. I sure hope it is just because you don’t want to yet. I am beginning to worry. You seem to be just fine though. You’ll probably just start doing it all of a sudden one day!” (You can see that a mother’s intuition had already kicked in…that something wasn’t “quite right”…but I couldn’t put my finger on it!)

You are still all grinny and happy. Your hair is still as red as it can be and your eyes are still blue. You really lap up the attention, and Maureen really gives it to you. She loves you and plays with you (even gets in the playpen with you). She mentions every now and then “When he grows up he’ll eat Sugar Stars with me.” You are beginning to like your jump chair real well and now when I lay you in your playpen, you immediately roll over on your stomach and then you start crying because you can’t roll back. Your latest showing off trick is shaking your head “no!”

At eleven months, I wrote: “I still wonder about you Ben, and your inability to raise yourself up or to crawl, etc. You love to walk with us holding onto your hands so I KNOW there’s nothing wrong. You are such a sweet little fellow.

Two weeks later: “You started sitting up from a laying down position and about one week later, you were scooting yourself around the floor and getting anywhere you wanted to go. I sure am glad because I was really beginning to be concerned.”

At thirteen months, I entered: “You crawl real fast anywhere you want to go. You pull yourself up and down all the time, and can walk just holding onto just one of my hands. We’re awfully proud of you.”

Ben at 15 months

At fifteen months, I offered this bit of information: “You are standing up by yourself, but lack the confidence to take off and then walk by yourself. You want to so badly. I think your babyhood is about over though, because you get into everything just crawling, and you do naughty things just to get attention! Oh what a pill; but you are still a very special sweetest of all baby boys. Little Redhead!”

A few weeks later, I had recorded a victory message. “Ben, you are walking all by yourself! No more concern — you do it like you always could have — like you were just waiting until you could start out perfectly.”

At sixteen or seventeen months of age, you experienced a vomiting and diarrhea sickness that lingered for several weeks. I took you to the doctor, and carried out all of his instructions for your recuperation. Looking back, I wonder if you got de-hydrated, and I never knew! I had done all the doctor said.

At eighteen months, you had your tear-duct operated on at St. Luke’s hospital. The young intern came to the waiting room to get you out of my arms (Grandma Hazel went with us), and you smiled and giggled for him and went right with him with no fussing at all. I was real proud of you. They wouldn’t let me come in with you (this was back in 1964). It was hard to sit out there and wait. When they brought you back to me, the Doctor said that you were the best-natured little fellow he had ever seen — that you were giggling right up until they put the ether mask over your face. Grandma Hazel and I thought that was being pleasant above and beyond the call of duty! The operation did not correct the problem.

20 months — Oh Ben! You are such a baby boy! You can just roll your eyes and get all sorts of attention from passers-by. You are starting to really say all kinds of words. You repeat everything we say. You can say, “story,” “Maureen,” “cone,” “sis,” “kitty-cat,” “Mary Kay,” and of course, “Mommy” and “Daddy.” Those are just a few because you can repeat almost anything! You like to play out in the fenced-in part of our yard, and are very content there, even when the older kids are further out in the yard. You are very, very lovable and will come and give any of us a big hug and love pats just out of the clear blue sky. (Maureen says, “Don’t forget to write that Ben says “Big Boy.) You go to Sunday School (the nursery) every Sunday and Margaret Hall says that you really get mothered around by the little girls. You just lap it up though. Your nick-name is “Jo-bobbins.”

Ben’s black eyes when he was almost well!

Two years: I started potty-training you today (in earnest). You have done real well. You are so sweet. You are talking so much now and are really growing up all at once. You were running after some little children, and you fell against the opened front-door and hit your forehead. By the time I could get to you and pick you up, you had a huge goose-egg there. It almost made me sick when I looked at it, it scared me so. I ran to the phone and called the doctor (who had been my pediatrician when I was a little girl). I described to him what had happened, and the shape you were in. His response was, “Now that’s really something to get upset about, isn’t it?” (said in a mocking manner). I suppose it was his way of calming a frightened mother, but I have always regretted that he did not have me bring you in and check you himself. He told me signs of concussion to watch for, which I did — faithfully. You seemed to exhibit none of them, and although both of your eyes were blackened as the days passed because the blood pooled in the soft tissue surrounding them…physically, you seemed to do just fine. You looked like a little raccoon, and people felt sorry for you and gave you lots of attention. You even looked that way in your Christmas “Santa Claus”picture.

Shortly after you recovered from that episode, you fell as you were running into the bathroom and hit your chin on the edge of the bathtub. Blood spurted everywhere, and just about scared me to death. Again, I called the doctor, and he said to take you to the nearest hospital’s emergency room and have it stitched closed. I did, (all by myself, except for Maureen, who was five…Jay was out of town on business). Again, they took you from me and we could hear you screaming bloody murder. It was TERRIBLE to have to stand there and listen, and not be able to help you. When I asked the doctor later how they had gone about that, he said they had wrapped you in sheet like a mummy and took the stitches in your chin. You have been through some difficult situations and dealt with them SO bravely. You also had a second operation on your tear duct that was finally successful!

 Ben at age 28 months

At twenty-eight months I related, “Ben, you are such a sweet boy. People take on and on about you and your red hair! You are VERY lovable and loving. You play around real good, entertaining yourself, and then you come over and hug my leg and suck your thumb. With that, you seem ready to go play again. You get along so good with Maureen and you worship her like she’s just about “it.” You imitate what she says, and if she gets into trouble, you cloud up and say “Dat’s Goreenie!” You don’t like for her to get fussed at…AT ALL!

You talk and talk and you pronounce all your L’s like R’s. You say, “I want to go pray” (for play). When Uncle Hugie was here today you got your little toy gun and pointed it at him and said, “Stick ‘em up, Buddy!” I thought he was going to pop. You and Maureen are always playing like you are cartoon characters. You are usually Yogi Bear, and she is Boo-Boo Bear. She hunted you up some little bow ties for you both to wear.

You are starting to try to color with Maureen and you love to play Mouse-Trap game. You can count to 12 all by yourself, and when you are supposed to be taking your nap, you are in there yelling “5-4-3-2-1-BLAST-OFF!!” Grandpa Fred got such a kick out of you saying “Yippyaye, Yippyaye — I just got to say Yippyaye,” when you were bouncing in their bed. You go to Sunday School every Sunday that you are able, and have only been unhappy about it once or twice, and then only because Maureen went into a different room.”

OUR MOVE TO SPRINGFIELD, MISSOURI

On January 29, 1965 (you were two and one-half years old), we moved to Springfield, MO. You seem to be quite content here, even though we had to leave all of our relatives in Kansas City. You and Maureen play real well together and half the time she has you being one cartoon character or another. So far today, you have already been Yogi Bear, Tuffy Mouse and Dixie Mouse. You go along with it pretty well too.

When you were almost three years old, you, Daddy, Maureen and I went to look at a house (we were in the market). You and Maureen went into the bathroom to check it out, and then came walking back into the room where we were. You seemed to be just fine, then all of a sudden your eyes started rolling back in your head, and you fainted. Again, we were very scared. That had never happened before. You had been nursing an ear infection for the past week. I had taken you to the doctor (a new one for us…having just moved to Springfield). You were running no fever that we knew of, and were seemingly on the road to recovery when this fainting spell occurred. You revived in just a few seconds, and I called the doctor just as soon as we got home and relayed to him all that had happened. He said to watch you…told me some things to observe, and that was that. You seemed to have no ill effects from that point on, except that we noticed that you stuttered a little bit (which you hadn’t done before). You then recovered from your ear infection in due time. (In looking back, I’m afraid you had a seizure of sorts.)

2 and ½ years old—On March 3rd, you made your first train trip. We rode to Kansas City to visit the grandmas and grandpas. You behaved so nicely on the train (five hours), and all the time we were visiting. Mommy was sure proud of you.

We lived in an apartment building the first six months or so that we were in Springfield, but finally found a house that suited us, and moved in during the summer of 1965. You seemed to like it there just fine, but about that same time, we traded off our old Ford car that we had owned since you were born, and also gave away our pet cat that had been in the family since before you arrived on the scene. She had given us two litters of kittens, and we had enjoyed them so, but we discovered that Maureen was allergic to cats; thus the cat’s removal. I always wondered what you thought of all these changes—you never asked ANY questions, just seemed to go along with the flow.

3 years—You are quite different from Maureen in temperament. A little slower in action; but I think you are quite a deep thinker for such a little guy.

 Ben-3, his sister Maureen- 5

I can’t believe you will be three next month. You are not a baby anymore. You are talking real well, and you sing real pretty too! You love to play with Maureen, but are beginning to let her know you are not to be pushed around. You are a darling, lovable, quick-tempered, cuddly little red-headed guy.

BEGINNING OF REGRESSION NOTED

In September of 1965 (you were 3 years, 2 months)–Maureen started Kindergarten at the Laboratory School at the College where your daddy worked. She was so excited, but when we drove up to the big circle drive to let her out…there was no place to park, and it was crowded. She had been there many times already and knew her way, and WANTED to go on her own, so I let her. You watched her go up the big cement steps, into the building and you called after her, “Goreenie, come back!!” I can remember thinking even then, that it was as if you perceived her being swallowed up by that building, and never coming out. Your voice was pleading – like you thought you would never see her again. I noticed that – and the fact that you seemed to be VERY lonely without her. You didn’t play like other little boys I had observed, or seem to know how to entertain yourself like others your age.

All that fall, I had been singing with the Sweet Adelines, and a group of us had formed a quartet. We had practices once a week, and you were the only little child not in school yet, so you went to the practices with me. You behaved very well, but as we were practicing, I would notice that you had left the room. When I finally hunted you up, you were always smack in the middle of the hostess’s bed, covered up with blankets, giggling to yourself – like you knew a joke that no one else was privy to. That happened over and over, and no amount of scolding, or even a little spanking, would deter you from finding the bed, and snuggling down into it.

Finally, at home you started to withdraw and stay in your room all by yourself. I would go to check on you, and find you in the pill-box (a card-board army play-house), buttoning and unbuttoning your shirt. It was as though you were practicing so that you could do it perfectly – but didn’t want anyone to see you. You played with your little cars by just rolling them back and forth, watching the wheels go around. All of this occurred while Maureen was at school, but when she came home, you did not come out of it and play with her like other little brothers would. You wouldn’t look at things on you own, or even when they were pointed out to you, and you wouldn’t try to play games, or with other children. You got a far-away look in your eyes.

You began to act confused, and didn’t seem sure of what to answer when asked a question. You finally quit answering altogether. You had experienced another vomiting and diarrhea episode and you were really sick. You would just lie and look at me with big, sunken eyes. I had taken you to the doctor, and you were on a diet of bananas, seven-up and jello, but you would still be sick, and one time in particular, when you went to throw up in the toilet, you cried out, “Save me!” This was when you were three and one-half years old. I remember thinking how profound that statement was for such a little fellow. It was as though you perceived that when you vomited, your insides were falling out of you, and you sounded terrified! (In look back, I’m afraid that again, you were de-hydrated, but no one checked that, or mentioned it to me if they did, and I didn’t know to ask.)

About this same time, your daddy was giving you your bath before you went to bed on a summer’s evening. You had been going barefoot, so your feet were extra dirty. He was trying to wash between your toes, and you cried and yelled, “Help, you’re roughing me up…you’re tearing my skin off my bones!” Now HOW would a 3 ½ year old know about skin tearing off of bones? We pondered THAT at great lengths! Again, for such a young child…that was such a “profound” way of putting it. It seemed that you were “extra” intelligent, AND “extra” sensitive!

In November of that same year, Maureen had a sudden asthma attack while your dad was out of town, and I had to rush her to the hospital and get her situated. I left you with a neighbor up the street whose teen-age girls were our baby-sitters. They were very good people who cared about you. I ended up being at the hospital until nine o’clock that night because the doctor had told the nurses what to do, and he didn’t make it in to see us until after eight o’clock. When I finally got home, the neighbors had taken you to our home and put you to bed for the night. Again, you never asked any questions about where we were, how Maureen was, or what had happened. At the time, and especially in retrospect, I found that lack of curiosity very strange. You wet your pants that night (which was unusual), but I never knew if it was because they forgot to have you use the bathroom before you went to bed, or if you were upset about all the proceedings, and the chaos of the day!

MY DIARY: A MOTHER’S MISGIVINGS

Ben at 3 & 1/2 years

3 1/2 years — I just have to write down my inner-most thoughts right now in hopes that several months from now, I can read this over and everything that I am so worried about now will have resolved itself.

My problem right now is Ben. It just seems like in these last few months since Christmas, he has changed so that I have actually wondered if there is something wrong with him. I even went so far as to call a psychologist about him, but decided to cancel the appointment for the time being. What is worrying us about him is the lack of communication we feel with him. It seems that he isn’t listening when we talk to him. He babbles about something else or sings some commercial while we’re trying to talk, whether we’re praising him, or just carrying on a regular conversation, or disciplining him. He never starts a conversation or asks questions about anything.

He still has to be told when to go to the bathroom and still wets his pants if he isn’t told. He also smudges in them continually, and sometimes I just get to feeling like everything is hopeless. It seems that no amount of talking, reasoning, or disciplining gets through to him. He is also getting quite a temper, and when I tell him “no,” he tries to pinch me or hit at me.

It seems that lately we sometimes have to resort to a swat on his bottom because he doesn’t act like he cares enough about anything to punish him by taking it away and you never know if you have made your point. In our day to day living, all these things don’t happen every day, so it is easy to rationalize some of them, or even to know why they happen, but when it goes on week after week, it is pretty hard to take. I hope and pray it is just a stage he is going through and nothing really serious. He has always been such a sweet child and so easy to handle that is makes this seem 100% worse because you wonder how he could change so much. I’m getting so I dread taking him anywhere, because he causes some kind of a scene. He seems to have no pride to work with…no feeling of “self”…and he calls himself “you”…instead of “I” (like “you can have a cookie” instead of “can I have a cookie”)? It has helped me to write it all down and get it off my chest.

We went to Kansas City the week-end of Easter and he acted so stubborn while we were there that we came home upset. He wouldn’t even look at anyone when they talked to him and never answered a question when someone (all relatives) tried to draw him out and give him some attention. He didn’t really act like he knew who anyone was, and the only attention he paid to them was if they would chase him. He just ignored his cousins, and Stevie (nine months younger than Ben) wanted to play so badly. He couldn’t understand why Ben wouldn’t do as he asked.

The main thing that bothers us is that when he does talk, it is always sentences that someone has said to him before. Out of the clear blue sky, he’ll say, “Kirsten is going to smack you.” (Kirsten is a little neighbor girl.) He also mentions sentences of correction such as “Ben’s making a mess,” or “Don’t touch the bottles” (of perfume on my dresser). It seems he remembers these things instead of all the good and happy times we have as a family and how much he is loved and cared for.

Another hard thing to understand is that he can say anything he wants to if its something he wants, like food, toys, etc. Surely, a three and one-half year old can’t be acting like this on purpose, but it makes you wonder sometimes. I hope and pray it is just a stage he is going through and nothing really serious.

He has begun to wake up by 5:00 or 5:30am every morning of the world. It makes no difference what time he is put to bed, and I have tried everything! Thankfully, he DOES go to bed by 7:30pm, so I DO get a little reprieve after he and Maureen have gone to bed — a chance to pull myself together (after a fashion), and prepare for the next onslaught! He will get up the next morning at 5:00am, go into the kitchen, and begin to prepare himself a bowl of cereal, and then go through the whole box if no one gets up to oversee the operation. He is making his “noises” (moanings with his hand up to his mouth pointed towards his ears, and “whooshes”…all very hard to describe) all the time, and I am concerned that EVERYONE will miss out on their sleep, so since I am the one “tuned in” to his adventures, I am the one who gets up early day after day. When I go to bed at night (never any later than 10:30pm), I find myself dreading the beginning of a new day, and the same problems facing me, with no hint at a solution to them. Unbeknownst to me at the time, this waking phenomenon will continue for the next three to four years without a hitch. How gracious that we cannot foresee the future—for if I had known that at this stage, as well as what all was ahead, I would have never made it.

Ben in bed with his stuffed “pals!”

Summer (1966)–4 years old, we went on another vacation. It was a C.P.A. Seminar in New York, City which your Daddy had to attend. And I got to go with him this time. We left you and Maureen in Kansas City with the Grandmas and Grandpas, because you had such close relationships with them and they loved getting to spend the time with you. I thought the whole thing was working out so wonderfully. I needed a rest, and you all would get lots of attention! What could be better! We worked it so that each child stayed with each set of grandparents for one week — then switched. That way, the grandparents had only one child at a time to care for, and each child got “special” treatment. My sister told me later that Jay’s mother came to pick up Maureen at her house (where Ben happened to be with my mother). When Maureen walked out the door, he started wailing, and she said that it wasn’t just “crying” — it was as though his heart was broken. We pondered all these things, wondering what was going through his mind. How was he perceiving these situations? Did he understand the passage of time? (I know that people explained to him that they WOULD be reunited in a few days .) Who will ever know exactly what he was thinking and feeling?

4 years — I am so glad I wrote down how things were going in April because in comparing them to the way they are now, I’m afraid I won’t be able to say they have changed like I had hoped. Ben seems to be getting worse as he gets older and it has concerned us so that we did call a Psychologist and took Ben to see him in June. It was a very upsetting meeting because Ben would not talk to him and babbled his sentences that he says over and over. They are, “Ben’s gruntying his pants,” “Shout Hooray for Thanksgiving Day,” “Ben’s wasting the cereal,” “Let’s play 1,2,3,” and “Chase me.” The Doctor said that Ben should have an EEG test and other tests to rule out any physical difficulties. The only thing he mentioned was “Autism,” which he didn’t tell us anything about, and I was left to look it up on my own. He did recommend that we take Ben to the University of Kansas Medical Center where they could do physical tests, and observe Ben’s behavior. After we left his office, I went to the library at the college where Jay worked, and found it in a book. It was NOT encouraging. As I walked down the steps to leave, my feet felt ”leaden”…like the life ahead of me was going to be HEAVY! I found my head reeling with the thought, “What has become of my sweet baby boy? Where has he gone?”

Ben was enrolled in the Laboratory preschool at the college, and it was to start in less than two months. I was counting so much on it helping Ben. The doctor said to try it, but not to be surprised if they wouldn’t keep him. Needless to say, Jay and I have been in a state of shock ever since our trip to the doctor. We have done much, much soul searching!(Continued on a page at the top called 3. “Kindergarten Experience and Family Changes for Ben”).

4 Responses to 2. My Diary About Ben’s Birth To Diagnosis At Age Four

  1. k.d. says:

    I have just found your blog and started to read it. Thank you so much for sharing your experience. I am looking forward to reading more. Some moments on this page I nodded because even though my daughter is high-functioning she did those things too. She’s just 5 now but she didn’t learn 1st person speech until after age 4. “Mommy help you” instead of “Mommy help me.” And repeating strange phrases too. And the emotional regulation problems and confusion over situations that are normal to other kids persist. I can imagine how isolated you must have felt in an era when most people had never heard of autism, because I still feel isolated even in this era of “autism awareness”!

    Like

    • autism45 says:

      It always blesses me if this blog helps anyone, and I appreciate you sharing that it ministered to you! Yes, it’s been a long road (VERY hard at times), but God is GOOD, and has been with us every step of the way. I can attest to that!

      Like

  2. Niccole says:

    I am up on yet again another sleepless night as my head fills overloaded with thoughts, fears, and worries about my son. He too was born a little red head with blue eyes. I was taken from him for what seemed an eternity at the hospital when he was born. I missed his first night, I didn’t get to hold him first, I missed his first bath, and they took him away for circumcision also. I had a very difficult labor and he came out a whopping 9 lbs 11 ounces with a low APGAR score, which they told me was just fine. I noticed my son Logan not meeting his milestones and became very concerned so much in fact that I was in the doctors office soon after he turned 1. It took us until he was 3 to finally get a diagnosis. He is enrolled in school and other therapy. I just started reading a few paragraphs in your blog and it was like I wrote it, after all you also have a red head, and they are one in a million! I will continue to read on and hope to find some more inspirational thoughts. Thank You Niccole

    Like

    • autism45 says:

      Niccole, your comment touched me, and I know how you feel (as much as anyone can). Hang in there, and turn to God for your help and strength. It doesn’t mean there won’t be sad times, but it DOES mean that HE is with you every step of the way. John 16:33 LB Jesus says, “Here on earth you will have many trials and sorrows, but cheer up…for I have overcome the world!”

      Like

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