Leah's Story - Part three

Several things I started to notice during this time and some I looked back and noticed after a lot of research on autism.

Leah began to do a lot of hand flapping. Shaking her hands when upset or when over stimulated. She also ran and walked almost completely on her tip toes. She would shake her hands and continually hit her face over and over. She would have a little fist and firmly tap her mouth or chin.

She didn't understand pointing. You could point and she would just stare at your hand. She still at 6 cannot regularly get the idea of pointing. She will look completely in a different place than you are pointing. I didn't realize how strange this was until my son was about 9 months old and he can follow pointing better than his sister.

Routine became more and more important. We sang a song to her one night and then we had to do it every night, she had a piece of cheese one night and it became a unbreakable routine with melt downs.

She lined up toys, my husband reminded me. I remember she just didn't play with them. None of them. I couldn't get her interested in playing no matter what I chose. She had a stuffed puppy that went everywhere. That was it. She had to have it... much like any child that is attached to a comfy item.Birthdays and Christmas were perplexing. When grandparents asked what to get, I had no idea. I would futilely try and find something she would like

She didn't like to be touched or hugged. On a rare occasion, she would allow family immediate members. If someone else touched her she could go into an immediate melt down or shoot away like someone touched her with fire.

She also began to develop Echolalia: repeating words or phrases she would hear. The worst was when some neighbors were walking by, I think she was almost 4 at this time, and she started screaming out the window, "Help me, help me somebody, anybody" from the Lion King. :o) Life is always interesting with an autistic... you get a new view on things.

The worst behavior was her need to escape. There is a term for it, I just can't remember it. She would watch, undo locks, pull off alarms, get into the garage, open the car door, hit the garage door opener and escape at 2! It was horrible. Everyone would say, "Well you have to keep your eye on her every moment." Do people really understand the impossibility of that statement? In the time you read this blog, she could have escaped if she saw a way. In the time you read a piece of junk mail, she would watch and see you were distracted and be gone. It was exhausting! To make it worse, most autistic deaths are drowning because they are attracted to water.

Then her sleep habits began to become very irregular. We couldn't get her to sleep, couldn't keep her asleep. Some nights she would sleep less than 4 hours.

Socially - she loved kids! This is not a typical autistic behavior, though I have heard of a lot of autistic kids that are very social. She would migrate to them whenever she saw them. There was never a stranger. However, she had problems interacting with them. She was always and still is a couple years behind her age. She still doesn't pick up on social cues. She doesn't understand when she is frustrating someone or when her behavior is unacceptable. Every social rule has to be taught. Every proper social response needs to be taught. With a child that has low receptive language skills and very few black and white situations this can be a challenge sometimes. She is very literal.

If it is okay to laugh at someone being silly when they fall, then why can't I laugh when they fall another time. If I play with a toy this way in one situation, why is it unacceptable in a mirage of others. We learn a lot of social cues, social rules by situations, by facial expressions (another tough things for autistic to learn), by tone of voice, by personal history, by observing. We transfer these into different categories and we recategorize as needed. An autistic person can't do this. It makes for a lot of social embarrassment and awkwardness and hurt for both parents and children.

To this day, Leah (7) has a hard time with receptive and expressive language. She is improving and I pray she will become more and more fluent in understanding language. She more often than not answers questions with completely unrelated answers. She gets a lot of blank stares, mom included. She will focus on one word and kinda like playing Taboo will answer something that comes to mind. If I asked, "Leah did you enjoy going to the library and reading books about dinosaurs today?" I might get a response of "I have a book about puppies" (she picked out the word book) or a response of "We are going to paint a dinosaur in my room." (picked out word dinosaur). The simplier and shorter the question, the more likely I am to get a better response, but not always. "Did you like going to the library?" is a good question. "What was the best part?" is not a good question - too abstract.