Alyssa was born a healthy, content baby, the youngest of three but it wasn't long before it became apparent that our beautiful little girl didn't act/respond like a 'typical' baby. She was distant, didn't like being snuggled, didn't make eye contact very often and rarely acknowledge being talked to. It was like she was in her own little world. She would rock constantly, flap her hands, became very agitated when her routine was suddenly changed and often had trouble getting to sleep. When she never grew out of the 'make strange with strangers' stage I knew we were dealing with some form of autism and with this realization came a devastating fear...what will happen to her when I am no longer here to take care of her? Who will take care of her? Unfortunately, this was not new to us. We had already been through this once before with Alyssa's older brother who was eventually diagnosed with Asperger's. Due to his high level of anxiety public school was not a viable option so I made the choice to home-school him. Was Alyssa also going to need to be home-schooled? If so how am I going to earn a living while homeschooling her and providing the round the clock care that she is going to require? Well, the first step would be to have her assessed by a professional. I had no doubt that my beautiful little girl was autistic but we would need a diagnosis in order to access any help available.

     Getting Alyssa diagnosed proved to be quite a challenge. The first doctor didn't feel she was 'bad enough' and told me "not to worry about it." When Alyssa was three she mysteriously contracted reoccuring C. Difficile and became quite ill. Over the course of three months Alyssa was seen by three doctors none of whom felt the need to refer her for an assessment. I continued to work with Alyssa on my own and we made good progress. She started responding more and more when talked to and began making eye contact. Her reaction to unfamiliar people, however, was getting worse especially to other children. She would become almost hysterical if around other kids for even short periods of time. If we were at home and had company over she would shut herself in her bedroom, rocking and crying until our visitors left.

     It wasn't until Alyssa was 7 years old while with me at my doctors appointment that the doctor asked if she had been diagnosed? He became very upset when he learned that no one had felt the need to and referred her to the Sunny Hill Health Centre for assessment. They put us on a year long waiting list which, due to a mix-up, turned into a two year waiting list. Before the two years were up our family had dissolved. Alyssa and I moved to another province.

     The move was very hard on Alyssa. She had trouble getting used to the change in her surroundings. She became more anxious, had more sleepless nights than usual, became even more intolerant of strangers and developed a separation anxiety. I had to be in sight at all times or she became hysterical. On the up side I was finally able to have her assessed. The diagnosis was no surprise..."severely autistic. Alyssa has Autism (DSM IV-TR 299.00). She shows qualitative impairment in social interactions particularly marked impairment in the use of multiple nonverbal behaviors, failure to develop peer relationships appropriate to her developmental level, and lack of social, or emotional reciprocity. There are qualitative impairments in communication with idiosyncratic language, and lack of spontaneous make-believe play or social imaginative play. She shows obsessive preoccupation with certain interests, inflexible adherence to specific routines, and some sterotyped and repetitive motor mannerisms such as hand flapping.

Alyssa's family will need a great deal of assistance throughout her life span. I recommend that she be referred to behavior intervention programs in addition to Speech and Language Therapy, Occupational Therapy, and Physiotherapy. Alyssa is still young and showing good intellectual abilities. At this time, it is difficult to predict future functioning. As she continues to develop and grow through normal maturation and interventions, it is anticipated that abilities will also increase. Alyssa has improved in some areas over time, this pattern should continue."

Dr. Bob Smith, PhD., C. Psych

Clinical Psychologist

     Finally, some help!! We spent the next few months going to one appointment after another, went through a parenting workshop (not much new info there), and started ABA (applied behavior analysis). All kinds of help was available except financial, the one we needed most. Much of the help offered would be beneficial to families new to autism whose child was much younger. Turns out that my methods of dealing with Alyssa were almost identical to the methods used in ABA. After all was said and done, there wasn't much more that could be done for us beyond what I was already doing. As for Alyssa's ever increasing separation anxiety the procedure for addressing that would have to take place over an extended period of time and involve finding someone that Alyssa was comfortable with. I was told it could take months, maybe even years to find just the right person and then it would be a very gradual process. In the meantime, I would have to find a way to generate some income as well as school her full-time.

     Finding a job I can do from home has proven to be a major challenge, one I haven't quite figured out yet. Thankfully, a friend of ours has a family farm, that with some work, is once again habitable. He offered to rent it to me for a reasonable price, so again, Alyssa and I packed up all of our belongings and moved to the farm, three provinces over.

     We have now been at the farm since April of 2015. We have had our challenges here and even though Alyssa is handling the change well we have lost some ground. I know we will get it back but not knowing where we will end up weighs heavy on both of us.

     The next step is to prepare Alyssa for the day she finds herself alone. She will need more than daily life skills, grade 12 and a knowledge of basic banking. She will need some sort of income established, most likely home-based, and a home that is hers outright. How I'm going to accomplish this I have yet to determine but I know that she will need this type of security. Something in e-commerce, maybe. Well, that's our story...thank you for taking the time to listen. 

Message from Alyssa: