An Insider's View - Living with Fragile X
Posted on 10th July 2019 at 10:30
When I say I have an ‘insiders view’, particularly on parenting a child or young person with special needs, it validates the parents' experience whom I support in my counselling practice. We may not have taken the same journey, but we can walk alongside one another.
Back in 2002 when my son was diagnosed with Fragile X Syndrome aged 4, I felt like I had been blasted at full force by a huge blow against the wall! It was devastating.
We had already been through a rocky journey from his babyhood to age 4 as we were told he was ‘globally developmentally delayed’. Some phrases you never forget and that is one for me.
We were told by the medical professional he may be deaf, brain malfunction, so may need a brain operation, was not walking or talking, so our aspirations were shattered. Was there anything else that could be thrown at us?!
His sibling was struggling, and a second diagnosis was made.
This was soul crushing! What was our life going to be like? How would my children make sense of the world and how would the world make sense of them?
So, we have had some distressing times as well as wow moments and this can come in peaks and troughs as we go through our children’s developmental cycle.
Today, my beautiful, placid natured, sociable, funny and food obsessed adult boy is a wonderful reminder of how life can be. He enjoys an active life with a wonderful set of people who help him with various activities in the local community.
He is still living with us in the family home. That’s the next fearful situation - leaving home! But we won’t think about that right now.
This whole life experience has offered me a vocation that I love and may not have done had I not had my son. Counselling families is my passion, to enable them to cope even better and enhance their achievements and uncover their resilience is immeasurable. Believe me the families I work with have resilience as looking after someone with special needs we need resilience and care. Self-care is vital.
Counselling is the ultimate self-care.
I am passionate about supporting parents, families and teenagers in improving their lives.
If you are a parent reading this and you feel I can help please get in touch...
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