I have had almost 13 years of practice as a parent of a child with ASD (Autism Spectrum Disorder). When our son was born we were thrown into a very different world. It has been difficult to keep our chins up and to keep searching for things that help our son, but as a parent I continue to advocate for him and for his successes.
Our child was very needy as an infant. He cried for what seemed like the majority of the time. He was born two months prematurely so we attributed much of these first behaviors to his other health issues, mainly his level three gastro intestinal reflux. This gave him great pain and also caused him to stop breathing from time to time, very scary! Medication helped with this, but still left us with a very fussy infant and this fussiness lingered long after what the doctors were calling colic.
I learned very early on that I needed to advocate for my child and attempted to learn anything I could to help me try to figure out what was going on with our little one. Why was he so incredibly fussy? Something wasn’t right and as a parent I began to seek those answers.
I knew I had to do something or life would be very difficult for my son. I attended trainings as a family child care provider and although these gave me ideas, nothing seemed to help for very long, and other ideas simply made no difference. I spoke with many specialists and sought help from PACER Center. Doctors simply didn’t seem to see the child I explained to them and offered little assistance.
A very wise trainer once told me that when you have come to the bottom of your tool box, open it back up and begin going through it again. This was told to me at a moment when I felt I had personally tried everything, read every book, modified schedules, routines, diet and nutrition, begged a variety of specialists in the medical field and yet nothing seemed to make any significant change. I guess this was indeed the beginning; I cared enough to keep looking and in fact I am still seeking knowledge to help my son be successful.continued on next page
I sent my child to preschool to try to get someone else to notice that something wasn’t right. Honestly, I think the doctors were thinking “neurotic mom.” I was given the “lets wait and see” until I finally said, “No! I want testing and I want it now.” The problem with testing is that it is not done in the child’s usual setting; so in a small one to one room, my child very successfully passed all of the tests. It was not until he entered kindergarten that the teacher almost immediately called me and wanted to do an evaluation. I quickly agreed and then became very active in creating and maintaining my child’s IEP (Individual Education Plan). I was a team member and advocate for my son.
Parents are the best resource for information regarding their child so this is why I highly advocate for meeting all new staff, new teachers, Sunday school volunteers, scouting personnel, and others in the community where your child will be spending time. Let them know how to be successful with your child and create a kind-of-a “do and don’t list” for better success. I also try to be very available by handing over phone numbers, emails, and by just being there. By doing some of these things I have mentored others to be successful with my child. I also take time to talk to other children so that they can understand my son and not just think he is “different.”
We recently had an issue on our Special Education school bus, so I will share this story of success with you. My son was disruptive to the driver, the para, and the nurse that rides the bus for another student. I immediately asked what had happened before my son became “naughty,” (the driver’s word). I was told, “Nothing, he just started taking things out of his bag and we kept telling him to put them away or we would take his bag from him.” It became very clear to me that something had happened to make my son feel threatened and therefore on the defense. Yes, I agree it looks like “naughty” behavior, but as I soon found out, that is not what was going on.
After speaking with my son, his teacher at school, and the staff at the bus garage I learned the story was much different, which totally explained the unusual behavior. It turned out the bus had left the school early to head to the high school. My son was left at the school and the bus had to return for him. This upset the driver and she told my son he needed to come out earlier (not a choice he can make as a teacher comes to get him when it is time to go). Then she proceeded to drive the bus with an angry face and continued shaking her head at herself (my son watches her in the mirror). My son sat watching her reaction, which caused him to become agitated and hence the behaviors began.continued on next page
I have learned to look for the real story, sort through the details to see what the focus is, and then offer a solution. To help with future bus rides, I worked with his teacher (case worker) and we made a “do and don’t” list for the bus driver. This list includes the importance of not showing negative expression because my son takes this as her being angry at him and since my son may see no fault on himself he may become very agitated. The other important element here is that the bus driver argued with him. This never works and only escalates my son’s negative behavior. By giving the driver tools for success, the odds of having another difficult ride home are lowered.
It has been a long journey so far and one that I do not see ending soon. I have learned, however, to ask for help, seek knowledge, and to advocate for my son. He is not a naughty boy. My son is a caring, loving boy who loves nature and being outdoors. He is a boy who has autism (Asperger’s Syndrome). He is a child with sensory needs who struggles with not only loud noises, but smells, lighting, and internal sensory issues like reflux. He is a child with anxiety who thrives with a routine and schedule of events. He is our son and we will continue to advocate for him long into the future while sharing his successes and accomplishments with anyone willing to listen. I end my story with a reminder to anyone working with my child. Please remember to share the positives you find each day with us, his parents. We need to hear those positives as it energizes and encourages us to keep on working toward his future successes.
Project Exceptional Trainer
Eager to Learn Instructor