We had no inkling that our daughter Isla wasn’t progressing as she should until around the age of 2. She reached all her milestones until speech didn’t develop as it should. We got the diagnosis at the age of 3 and I went through various stages before I fully accepted her diagnosis. At 12 years old our life with Isla is a different from what we expected but is a happy one.
The first few years after diagnosis was an intense time spent trying to fix her. Trying to find the right treatment, specialist or medication that would make her come right and be “normal”. It was so hard to envisage how she would progress but there was pressure to give her the best possible chance to reach her potential.
Much to my surprise I had to advocate and push for her to get the care she deserved. I was made to feel I should be grateful that she wasn’t worse off. I could have easily given up here. She could have easily fallen through the cracks if I had listened.
Once Isla was in the right environment her development rallied. This was mixed with a rollercoaster of emotions as expectations were met with the reality of slow progress. Reaching developmental milestones took longer with a lot more practice and often a different approach needed. The feel-good factor when she reached these steps towards independence and growth was always amplified.
I did not give up but I mellowed. I was not failing letting Isla be herself. As the years passed her limitations became clear and no matter what I did nothing was going to change that. Our focus changed from academic skills to life skills. From worrying about what her place would be in the world to enjoying our world with her in it.
My fierce love for Isla has never changed and I fully accept and enjoy her just as she is. Expectations and pressures do not exist now. I no longer feel like I’m missing out on normal life but realise I enjoy our life that Isla has created for us. This is our normal.