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Our Early Adventures In Autism

"We cannot direct the wind, but we can adjust the sails."

Bringing Our Bundle of Joy Home From The Hospital

After a healthy pregnancy and a totally natural childbirth, weighing in at 8 lbs. 8 oz. (whew!), Christopher Steven Lawrence was born on March 6, 1990 at the Murray/Calloway County Hospital in Murray, Kentucky. He cried from the moment of his birth and didn't stop for nearly three years!

I will take that statement back. There were times when he was extremely passive and you would not even realize he was around. I think that it was his first survival skill that he ever learned. Not that we were aggressive toward him, he just had a lot of sensory issues to deal with, and being very passive was his way to deal with that.

For instance,we know now that he is extremely sensitive to touch. What happens when babies cry? They get touched...A LOT. Rocking him, holding him, pacing the floor all night with him, etc., did not help him. It seemed to only make him cry more! He barely tolerated being held long enough to breast feed.

When he was very tiny (less than a month old) he would stiffen up just like a board when we picked him up. He was very rigid and inflexible. He held his head in a certain position most of the time, as if anticipating (dreading?) the next moment when someone would take a notion to pick him up to play with him. He would hold himself in that way and I remember complete strangers walking up to me to let me know that that is not the way one should hold a baby! How very rude of them! He is my third child after all, and I had plenty of practice before he ever came along!

Here is what Christopher taught us in those first few weeks of his life. In order to play with him and have fun, we couldn't hold him and bounce him and all of those usual things that most people do with a new baby in the family. Instead, we folded up thick blankets, put them down on the floor, and let him lay on the "pallet." We didn't put him up on a bed because then he could wiggle and fall off. "Pallets" are what mothers used back before playpens were invented. To play with him, we would get down on the floor at his level and roll, play, make faces, shake rattles at him, and so on. He always responded with the usual smiles and giggles, although he avoided most direct eye contact.

Please keep in mind that we were in close contact with health care personnel all during Christopher's infancy. He had all of his immunizations and well-baby checkups. Nobody I talked to seemed to think that anything was amiss about Christopher. My pediatrician seemed to think that I was just being a bit "over protective" about him. When I expressed any concern, my doctor assured me that "he was developing just fine" and I shouldn't compare him to my other children, because all babies develop differently.

Christopher As An Infant

As an infant, we were not certain if Christopher could hear or not. Some times he seemed as if he could hear, sometimes not. Other times I felt like he was just "ignoring" me or being "stubborn." I would take him to the pediatrician who would look in his ears to see if the ears looked "a little red" or not. Then he would write me a prescription for some antibiotics, pat me on the shoulder, and tell me that I worry too much.

One of Christopher's favorite things to do was to ride in his stroller. I didn't mind this at all, because we both were able to get plenty of fresh air and sunshine. We were fortunate to live in a small town with an excellent sidewalk system. We used the handicap ramps to manuever the stroller up and down the curbs, steps, and other obstacles.

He seemed to really enjoy all of the sights and sounds as we walked across town. We went everywhere with the stroller. I rarely used the car, unless I went shopping and had a lot of items to carry. The movement of the stroller seemed to calm him and he would often fall asleep in the stroller.

Even after he learned how to walk, the stroller was still his favorite mode of transportation. We took him for midnight strolls when he had trouble falling asleep at night.

Once he learned how to climb up on things, there was no stopping him! Instead of asking for things, he would pull up a kitchen chair and climb up to get things. He liked to climb up on top of things and jump off. He started this by jumping off of the porch and onto the ground, and soon he was jumping off of higher and higher things. He was like Evil Kneivel and I had to be on constant guard.

Another of his favorite things to do was to twirl himself up in my floor length lace curtains. He would grab an edge of the curtain and spin so as wrap himself completely up inside very tightly. Then he would spin back around and unwind himself. He tore down several curtains in this manner. I finally wound up hanging bedsheets on the windows: I just threaded the rod through the top casing, and hemmed them to the length that I wanted. Those curtains are not as irresistable as my lace curtains and sheers.

He was also a hider. He would hide inside of closets and cabinets. I never considered this too much of a problem, because my other children liked to play hide and seek too. The problem we had was when we went to find him. If we called loudly for him, he would hide even harder or go to an even more remote part of the house. He would never answer back! He learned how to sing "Where is Thumbkin?", so one time when I lost track of him, I went around the house and softly sang "Where is Thumbkin? Where is Thumbkin?" and a small little voice in the closet answered back "Here I am! Here I am!"

Christopher As A Toddler

When Christopher was about 18 months old, the "terrible twos" set in - we just thought he was being precocious. Instead of talking, he began to throw temper tantrums. He screamed and screamed. He screamed about anything and everything, and then about nothing at all. It seemed he was so very angry, but we could not figure out what was wrong with him.

I took Christopher to a Speech Clinic at Murray State University, who wisely advised us to have his hearing checked. Then we took him to the Lion's Club Crippled Children's Clinic in Paducah, KY, for his hearing evaluation. That was a nightmare, and the results were inconclusive. They advised us to go to an otorhinolaryngologist (ear, nose, and throat specialist). The specialist said that Christopher had the worst ear blockage that he had ever seen in his life, and we spent the next three or four years or so making regular visits to see this doctor. We were holding onto the hope that once Christopher's ears were "straightened out" then he would begin talking.

It was not until several years later when I requested Christopher's medical records from this doctor, did I know that he had even suspected Autism as a more acurate diagnosis for Christopher. He had never mentioned a word of his suspicions to me during any of our visits. I would like to think that he was trying to spare my feelings rather than milk my pocketbook.

A Diagnosis of Autism

Christopher was in a Special Education Preschool classroom for 2 years, in order to receive Speech Therapy for his language delay. The Speech Therapist there tried to tell me that Christopher had Autism. What made it impossible for me to accept, however, was her "professional" prognosis that Christopher would never talk, never be potty trained, and would never be in regular classes with all the other kids. In all of the time he was at the preschool, he was completely mute and never uttered so much as a syllable. She spent two entire years holding a black and white drawing of a candle with a flame on it, to try to teach him the word "fire." Instead of saying the word "fire" he said the word "hot." Her idea of Autism was that it is a more severe form of mental retardation (which research has proven that it definitely is NOT!).

I refused to accept her prognosis, so if that is considered the "denial" stage then I was there for a couple of years. Not only did Christopher learn how to use the bathroom during that time, he also learned how to count to 20, he learned to say his alphabet and could point to and name each letter. I am a Special Education teacher, after all. He is my prize pupil!

We were fortunate to have moved away from that school system by the time Christopher was old enough to start Kindergarten. There is NO doubt in my mind that if Christopher had stayed in the old system, the Speech Therapist's prognosis for Christopher would have come true.

The diagnosis of Autism (which I actually could accept) came when Christopher was due for an educational re-evaluation at age 6. The speech therapist who was in charge of this re-evaluation was very wise. She is now retired, but she came into our lives at the time when we needed her the most. I feel as if she was an answer to all of our prayers.

She did an extremely thorough job of conducting the evaluation, even to the point of doing behavior observations at his daycare center. She asked for everything that I knew about Christopher in his home setting. She was the very first person who not only asked me what he could do at home, she actually believed me, too! Up until then people would roll their eyes when I would tell them all of the neat things he had learned how to do, like dress himself, and read, and even talk sometimes. They thought I was the world's biggest liar! Either that, or a delusional mother with a very vivid imagination!

Anyway, when all of her observations and evaluations were complete, she sent the results to a consultation service who wrote up Christopher's report. The report contained every bit of the evaluation information, and gave a very clear and accurate picture of who Christopher was at that time. Then she sat me down, and very quietly, almost like a grandmother, told me that Christopher did indeed have Autism which is not curable, but it isn't fatal either. Then she said , and will never forget this as long as I live, "Christopher is doing the best that he can do, and it is up to us to do the best that we can do to help him." Rather than concentrating her efforts on telling me all of the things Christopher could not do, she said that it was important to begin with the things that he can do, and use that as a foundation to build from.

That is how it took us 6 whole years to get a diagnosis of Autism for Christopher that we could actually accept.

Children need more models and fewer critics.

If you are a parent with a child who has just received a diagnosis of autism, please email me...it might help to talk to someone who knows what you are going through!

If you are afraid that the light at the end of the tunnel is another train, please email me!

If you are a "veteran" and would like to share your experience with others, please email me!

If you just need a GROWN UP to talk to, please email me!!!

Web Page Author: Janet Lawrence
Updated: 11/17/99
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as of September 26, 1998