Story By Jennifer Distefano
Growing up, I’d always imagined myself as a mom, and since I love children, I decided to choose teaching as a career. I was elated when I found out we found out that our second child was a boy. I envisioned my sons as best friends, natural playmates as they were so close in age. But as my younger son became older, it became clearer that he was not exhibiting the same behavior traits as children his own age. While he had language, and met the criteria for appropriate speech for his age, his thoughts were often disconnected and focused on one interest. He exhibited zero desire to play with his brother or peers of his age group, preferring instead to lie on the ground and play with his trains.
His memory was incredible and he could read the letters of the alphabet at 18 months of age. These were characteristics I recognized from my teaching placement in an autism classroom. When I finally had him diagnosed with autism, it was cathartic. I knew that I wasn’t imagining things, but I also felt a profound sadness. I was asked by a work colleague if he would ever learn to tie his shoes or drive a car. When you receive that diagnosis, it is impossible to think of anything beyond that present moment. The future is an impossibility. You are in a grieving process as a parent, as life as how you expected it to be will not be. This is a normal part of the diagnosis. I felt lost, as a teacher I had no one to turn to. My parents were very sympathetic. I was overwhelmed and didn’t know how I could help him.
I joined an online support group and another parent suggested that I put him in full time Intensive Behavioural Therapy, better known as IBI. I researched centres and found an excellent one. The only issue was that the cost per year was $60,000. I phoned our bank manager and prepared myself to remortgage our house and liquidate our investments; as I would have sold my right arm to desperately give him the help he needed. Financial crisis averted. He was enrolled in full time IBI treatment, where he made leaps and bounds in his learning and social interaction. He learned to make eye contact, develop friendships and converse with others in a back and forth conversation. I was elated. My son was making progress and although we had some rough days, there was now hope. I didn’t want to think of the future, as it was still too far ahead, but I was able to see him working to his full potential.
The next few years flew by and he started school. He still found it difficult to make friends and develop friendships. But I kept him in part time therapy and social skills groups to try and develop this area. Seeking friendships with other moms and support groups helped me to vent when I was feeling overwhelmed. I still felt that some of my friends and family were far from understanding, blaming him and saying that he knew what he was doing when he would act inappropriately.
That is one of the most difficult aspects of being a parent to a special needs child. You feel alone and unsupported, as though it is you and your child against the world. You are constantly made to justify your child’s diagnosis or defend them. It is an exhausting and never ending struggle. As a family, we sought out others who were understanding and had children of their own with special needs.
Sometimes, to save yourself and protect your child, you may need to cut out unsupportive friends and family. This is extremely hard, but necessary. If they are not there for you when it is your greatest time of need, then they will probably never understand the emotional implication of raising a child with special needs. I saw a cartoon with a mom wearing a cape holding up a bus with different things written on the bus such as school, therapy, family, etc. You will constantly be presented with challenges, and it often feels like you are just getting your head above water and then are pushed down again. It means sleepless nights going over an Individual Education Plan, meeting with the school team, organizing a birthday party where they can feel successful.
It is exhausting and I have often neglected my own needs to the detriment of my health. I am learning to take some time for myself. I can’t fight for my son’s needs if my health isn’t ok. The journey is long and can be arduous, but you are not alone. If I can pass on one message that I feel is so crucial to parents of special needs is that you need to find support for yourself, before you can support your child. As parents, we often feel so inadequate and question our decisions. We always feel that we haven’t done enough.
I’m here to tell you that your child’s greatest strength is you as a parent. The road won’t necessarily get easier, but you will rejoice in every victory and milestone they achieve. It is one more accomplishment you have attained together.
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