This interview is conducted with the mother of a five-year-old patient who is suffering from Autism. Due to privacy reasons, the name of the patient has been completely changed.
When your child's disability was initially suspected? Please discuss who brought it to parents attention. If it was the parent who first suspected it, what was the cause for the suspicion?
The child's disability was initially noted when Jessica was three years of age. This disability came more into my attention when Jessica's younger sibling reached about one year of age. Comparison between the two siblings showed that something was really wrong with Jessica. As opposed to her younger brother, Jessica was more socially withdrawn. We used to notice that Jessica didn't respond as readily to her name and panicked a lot in large gatherings. Thinking it was just a normal infant reaction, we didn't pay much attention to it before. Even after Jessica was more than two years of age, I had to pay more attention to her as oppose to my younger child.
Some of the other things I noticed were that Jessica rarely pointed at things. She never tried to converse with me or tell me something. I began to notice the difference when my younger one was doing all these things at a much younger age. Jessica also had problems in concentrating in things like watching cartoons or movies. That is something that infants are quite interested in but Jessica would always get up and start doing something else.
I also felt that she had very little reactions to the things happening around her. For instance, my older daughter would get terrified if she saw a spider. That is an example of a normal reaction that a child would show. However, Jessica didn't show any positive or negative reaction. Jessica also didn't share anything with anyone. She liked to keep her things to herself and didn't share her toys with her siblings.
Please share with me your experience with the initial testing process? Also be sure to discuss the child's experience, as well as how it may have changed during additional testing over time
When I noticed the odd behavior that Jessica was showing, I discussed my concerns without general physician. After hearing the symptoms that I had presented, the doctor looked into this matter in more detail. She began to interact with Jessica and started asking her questions. Pretty soon we had concluded that Jessica had not reached many of her milestones at time.
She told me to get this matter checked as soon as possible because early intervention can really alleviate her symptoms. The initial testing process did scare me a great deal. I had to consult a team of doctors that included a doctor, psychiatrist and a speech and hearing therapist. As a concerned mother, my mind started thinking a lot of bad possibilities. Even though none of the tests were painful or invasive, I felt very apprehensive about having my Jessica interrogated like this. The first couple of tests that Jessica went through, she was very terrified. The faces of the doctors were new to her and due to this reason; she got very scared during the tests. Seeing how our hospital visits have increased now, she has become accustomed to her doctors and the environment at the hospital.
After hearing the diagnosis, I was shocked and in a lot distress. However, I was not necessarily sad that my daughter has autism. My love for her never reduced or I never thought of her as a burden. One thing I was sad about was the challengers that we would have to go through in a world where most of the people are normal. It is true that this isn't a very autistic friendly world. There would be barriers and obstacles in every step of life but I was confident of solving them. I had accepted that Jessica had this disability and that I am going to work with her to make her life easier.
What was your level of involvement during the IFSP development? Be sure to discuss thoughts on how the process could be changed (if applicable).
As soon as Jessica got diagnosed with Autism, our entire family was very anxious to help her cope with the problem. Even though my husband and I were very distressed, we tried to get as involved as we could in the IFSP development. To be honest, we did not know much about the disorder or even the main problems that our child would be facing. In order to gain a better understanding, I tried to do all the research that I could.
My husband and I tried to make sure that we cooperated with the professionals as much as we could. We were told to be involved in most of the activities that Jessica did. In other words, we had to be there while she was eating, or playing. A major thing that I gained from this intervention was how to organize myself and my thoughts. Taking part in my daughters treatment, I felt significant and in control. The first therapies and sessions that were conducted gave me hope and made me feel as if things wouldn't be so bad after all.
One thing I really didn't like was the wait that we had to go through to attain these services. There was a long wait from the approval till the initial assessment was conducted. Being concerned parents, we wanted treatment to not be delayed another day. We started noticing Jessica's symptoms more after her diagnosis. Another thing that I would like to change is that the service providers were quite unresponsive and not flexible to what we wanted. It is true that their therapies and interventions really guided us but it would have been better if they also listened to what we had to say. In my opinion, the input from us really matters and would go on to decrease the stress that the entire family is going through. This would put us and the service providers both at ease.
Please share with me the various forms of therapy, treatment, and support that you and your child have received over time. How would you describe the relationships with the various service providers? Be sure to include the ability to have your needs understood and met by service providers
After the diagnosis, my child was started on speech and hearing therapy to begin with. Since Jessica was young at the time of her diagnosis, the beginning treatment was carried out at home. Jessica was started on specific learning activities that involved a lot on input from her. I was basically trained how to act with her and how to direct the learning activities. Furthermore, behavioral therapy was also initiated. I would say that for my husband and me; we just had to work a little harder on Jessica. We had to teach her the basic manners and the basic social skills over and over again. We made sure that she was challenging herself and trying to reach the goals that were set for her.
The service providers were very helpful and cooperative but I would still say that they should have listened to my input as well in all the sessions. Her therapy sessions were always conducted on time and with a lot of effort as well. It is safe to say that all of us had to solve through our own confusions and problems. Jessica got the best facilities and adequate services. We were trained regarding how to act and what to do with Jessica but they shed little light on our own feelings and perceptions. It is my personal opinion that caregivers also need support and therapy. These facilities should be added for families who have an autistic child.
On a brighter note, I found a lot of support while interacting with other mothers who had children with autism. I got to share my experiences and got advice on how to deal with the situation.
What are your dreams and goals for your child? Discuss both the joys and frustrations that you have experienced with your child.
I am very confident that my child can go on to do anything that any other child can do. I am open to any further treatment or therapy needed for Jessica. I can easily say that because of this disease, I have gotten to bond with her in a very special way. Seeing how people are becoming friendlier with autism, there is no saying that Jessica will be restricted in any of the goals and dreams that she has for herself. I want her to figure out what she wants and then go towards that goal.
It is quite frustrating when I have to explain to people what my daughter is suffering from. She has the tendency to be rude and bump into people. Being her…