Health

Why my Daughter’s Autism Has Made Me a Better Person

By Jane Constantine

Today my daughter read We’re Going on A Bear Hunt all the way through, all by herself, without any help! I am bursting with pride. Alexa is actually 10 years old, so you may question my pride in this. But until a few years ago, she could say very few words and couldn’t construct a sentence. She is of around 100,000 children in the UK today with autism spectrum disorder.

Watching your child develop and gain new skills is part of the joys of parenthood. Alexa was a beautiful little toddler, full of mischief and joy but when she didn’t achieve the expected milestones, I was understandably worried and confused.

When we started to attend the Stay and Play sessions at our local Sure Start centres. Alexa would happily play with the toys and loved the puzzles and sensory activities but, at the end of the session, when the little ones would happily sit and listen to the storytelling session, Alexa would just wander off uninterested. She didn’t even seem aware that a story was being told. Most of the toddlers around her age said words quite frequently and were pointing and communicating to their parents; we had a hard time getting Alexa to turn around when we called her name.

I consulted a paediatrician when Alexa was just over 2 years old. She was diagnosed with speech delay and we were asked to come back when she was 3 years old, if no further progress was made. A year later, we were back in her offi ce.

My gut feeling was that something was wrong. Autism was casually mentioned but an assessment was needed. Looking back, we were fortunate that our referral came through in 9 months. That assessment can take a frustratingly long time - a friend of mine has recently waited 18 months to get a diagnosis for her son.

Within this time Alexa had started to say some words - bizarrely one of her fi rst was “treasure chest,” not the typical “mummy” or “daddy” – but her progress wasn’t consistent. She would say a word one week, but it could take three weeks before she would say another.

Finding out that your child is diff erent and will go through life struggling is hard. I think it is perfectly normal for any parent to be in denial and to not want to hear this and I was guilty of this to a degree. Hearing Alexa’s diagnosis shattered all the happy expectations I had for her and I went through a period of grieving the “perfect” child I seemed to have lost. Luckily, Alexa had started attending a pre-school which some other children with autism attended and it had a specialist SEN group attached. This helped greatly. I went through a period of feeling sad and wondering what the future would hold for Alexa. After a few weeks, I had a chat with myself and realised that my negative state wouldn’t help me or her. I resolved to fi nd out EVERYTHING about autism that I could.

I discovered a new determination to get Alexa all the help and support I could and that had to start with my husband and I - we had to step up and be ready to take on everything that this condition threw at us.

I joined groups; I listened to others; I made sure Alexa received intense speech therapy. One of the best things I did was enrol on a Makaton sign language course. This has been fantastic in helping us communicate with Alexa and vice versa. Once we had an offi cial diagnosis, we were also able to obtain an EHC, a legal document which ensures Alexa is supported in her schooling.

Now Alexa has no physical issues, her sensory issues have subsided and she has many more language and communication abilities. Most importantly she is a happy and healthy girl. Yes, she has autism and if I could take it away from her I would, but we have given her the best tools to help her manage.

She IS my perfect child and she has taught me so much. In particular, to be much more understanding of individuals with disabilities; that we are all diff erent and that diff erences can and should be celebrated.