Autism and our Family

My daughter, Alexis has Autism. She was born in 2002. Getting an official diagnosis for Alexis was a struggle for us. My mother has been involved with special needs children my whole life- she suspected earlier than the doctors, that Alexis had developmental problems.  At the age of 6 months we noticed that Alexis was not developing normally. Keith (my husband) and I brought Alexis to several different doctors for neurology testing, allergy & hearing tests… however, we got nothing as far as any ‘diagnosis’ is concerned… most doctors- we felt, had no idea how to explain Autism to a parent, maybe they didn’t know much about it themselves.  One doctor even had the nerve to tell us that essentially, Alexis was ‘just a brat’ and that if she wanted food or drink that she should verbally ask us before giving it to her.   I can’t even express with words the disappointment and anger I feel towards this doctor.

We decided that the Mayo clinic in Rochester was the best option for us if we wanted a real diagnosis and we got that in 2006, Alexis was 3 years old at that time. She was diagnosed with Autism -due to the fact that she showed developmental delays “across the board” according to one of her doctors. It was also at this time that we learned the term Apraxia, something that the doctor thought may be a diagnosis for Alexis. Apraxia is hard to explain and Apraxia with Autism is something I have yet to thoroughly research, they are two distinct conditions that share some similarities. Apraxia is a condition that interferes with an individual’s ability to develop, execute, and sequence motor movements that create speech.  We recently had this diagnosis ruled out.

Alexis is often covering her ears, flapping her hands, has obsessive ‘routines’, a photographic-like memory, and an indescribable creativity.  Keith and I try our best to deal with her meltdowns, sometimes it is quite difficult. We have tried many different sensory stimulating approaches that sometimes work, other times not-so-much. We’ve tried deep pressure massaging, joint compressions, tactile brushing,  anything visual or auditory that we think will help, we have also tried audio support tools such as Vital Sounds.  Simply changing her environment can help-  mostly it requires masterful logic and reason at the exact time and place to help her out of a meltdown.  Sometimes simply giving into her shenanigans-whatever they may be can help too, this often means being creative. These techniques can either result in a feeling of discouragement or a feeling of relief as the chaos can last for hours at a time if not handled correctly.

This disorder will possibly make her dependent on us for the rest of our lives.  My hope for her is continued progress.  I can admit that in the early years all I wanted was for her to be a typical child and to have a normal childhood, I understand now that this was just for my own selfish reasons- I love Alexis just the way she is and her Autism makes all of our lives a more colorful place.