Andrew and I have been married for almost 10 years and during this time we have been blessed with three children, Tamar, Carmel and Peter. Tamar and Carmel are very healthy happy children, while Peter, also a very happy child, has ASD. As a newborn, Peter was healthy and showed no obvious signs to be concerned about. As he approached his 1st birthday, there were subtle signs that there was something wrong, although we had no idea what. He suffered with skin problems from an early age, and we attributed much of his frustration and grumpiness to this. He would become very distressed, flapping his hands and crying a lot. He didn’t respond to social situations in the same way Tamar and Carmel had done at this age. He had peculiar habits, like pressing his bare skin against the floor or other cold objects, and just after he turned one year old, he seemed to lose all the words he had learned – mama, dada, lala etc. He stopped clapping his hands and pointing, he struggled to keep eye contact, and made no effort to copy behaviours from other people, the way we expect most toddlers to do. When we should have been seeing developmental leaps forward, we were seeing regression.
Although we can clearly understand it now, it was very confusing at the time. It was quite an isolating time, as we couldn’t explain to other people why he acted in this way. When Andrew first made the suggestion that Peter could have Autism, I cried and rejected his suggestion. It took a while for me to acknowledge we needed to ask for help. During the next year, we went through a string of referrals between health visitors, doctors and autism therapists until eventually in November 2016, Peter received a positive diagnosis for ASD – Autistic Spectrum Disorder.
I would love to say that at this point we had some very spiritual and Holy reaction that you can all be in awe of – but really we were actually just relieved to have a diagnosis. It gave us a reason for all the challenging behaviour and unexplained habits that Peter had developed. There was little shock or sadness, as we had been prepared for this. But it did raise a lot more questions about our future. As we drove away from the assessment clinic that day, I can remember thinking
- Who will look after him when we die?
- Will be ever get married?
- Will he still be living with us when he’s 40?
- Will he ever be able to talk? – at this point he had only a few audible words.
From that point we have learned as much as we can to help ourselves and Peter, we have attended parent training workshops and read lots of books. Our care from the health service has varied but overall we are grateful for those who try to help us. We have a good support network in our family, who help us and love Peter unconditionally. We have friends and a great church family who have become an important part of our lives. The best part of a good support network is that we can be honest in good times and bad, without feeling judged. Our faith has been tested in the last 4 years, but God has never wavered, he is the ultimate support and rock in our lives, who never changes or grows weary of us. That is the very brief story of how we arrived at this point.
Every special needs family has their own story and my hope is that in sharing this part of our lives we can help or encourage other families. I also *really* want to be as informative as possible, so that those of you who would like to help special needs families will be better equipped to do so.