In my clinical practice, I have worked with many parents whose child has received a diagnosis of a developmental disability like Autism Spectrum Disorder. For them, the realisation that their child is “not normal” is mostly heart breaking, Sadly, one could see them emotionally crumbling down but the weight of a “document”. As tough as this may sound, in those challenging moments I see my role (psychotherapist) as someone who helps instill in them inner strength, hope, optimism and positivity. I have found that once parents are able to find these strengths within themselves, there can be no better support and advocate than them for their children.
I am sharing a real-life story of a parent (with her permission) that I have worked with a hope that it resonates with you and helps you develop empathy for many children and families on the spectrum.
S (child) was 2 years old when her mother had started noticing that she had not started talking yet, she had terrible tantrums and would use grab her mother’s hand to ask for things. S would not make eye contact and was sensitive to certain kinds of clothing, sounds and visuals. Ms. A (mother) was worried and believed that she might be delayed, and that S may be slow in reaching her milestones but eventually she would get there. Ms. A’s story is mentioned below in her own words.
“My child was two years old and had not yet learned to speak not even one word or the blabbering sound kids make. I was cautiously nervous because I had heard about ASD. My worries led me to do my own research on ASD and now her behaviors made total sense to me. I could understand why she would have meltdowns when we were visiting a new place. Why she would not eat food of a certain kind and texture and why she would not wear clothing of a certain feel. However, as a mother I was hoping that my child will outgrow these difficulties and would reach her developmental milestones albeit delayed. When the behaviors continued well over 3 years of age, I began to panic as I was foreseeing her imminent entry to school and how that would play out.
At this point I could not delay seeing a developmental pediatrician, my fears came true, the diagnosis what in line with what I had been fearful for. S was diagnosed with ASD (Autism Spectrum Disorder). In that very moment I felt as if I had become numb from the trauma and felt physically debilitated, I could not function. This was a traumatizing life event for me. My husband was in denial about the diagnosis and that added to our disagreements about seeking help for our child. Our relationship and family life were adversely getting affected. After few weeks of persuasion by my family and close friends, I decided to seek professional help for myself. My counselor helped me understand with the metaphor of using an oxygen mask first. She helped me unpack my feelings and how grief works in stages, stress, self-care. My counselor encouraged my husband to attend the meetings and helped us discover how we both could work as a team and be a strong advocate for our child. Our therapist helped me develop an understanding of why it was important to put myself first if I genuinely wanted to provide the best care to my child. I must say that seeking professional help for myself made me genuinely understand that if I was not in a good place myself, I could not help my child that she desperately needed from me/us.
Slowly and gradually, I started seeking out professional help and treatment for S and began to see the progress and growth. This was my aha moment as I found a purpose in life, I began to feel hopeful and positive about my child’s future. This positivity encouraged me to become an active partner in my child’s treatment right from planning to delivery. I remember what my counselor had told me that as a parent I can be the best ABA therapist for my child. While S is involved with ABA therapy, I seek regular consultations with her therapist to find out how I could support my child practice the skills that she is acquiring in her own therapy.
Through my own lived experience, I have begun to understand that there is a huge vacuum/gap of services and supports for parents who need guidance for themselves and their child. I am now actively considering joining Autism Society so I could use my skills, knowledge empathy and passion in providing/activism advocacy to the children and families.
I strongly encourage all parents to seek professional counseling help for themselves and they may be eligible for reimbursement through Ontario Autism program funding.
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