autism, parenting, special needs

The emotions of being a parent of a child with a disability

When we plan to have children and envisage ourselves as parents, we can only imagine a feeling of happiness as we picture life with our perfectly developing and functioning children. The thought that our child may have a disability, physical or neurological, never enters our mind. Unless of course anything is picked up in utero, we as expectant parents, just sit back and eagerly await the arrival of our little bundle.

And then the big day arrives, the day which we go into labour and give birth to our much-loved and long awaited for baby. Of course, we ALL feel love and happiness for our newborn, but I think we forget there are parents who are then faced with heartache and agony, as their tiny baby is put into the care of a team of doctors and nurses for medical attention, which may just be needed for those first hours, days, weeks, months, or even a lifetime. There are also the parents who have no idea that as their child grows, certain concerning behaviours may emerge, and life then starts to take a completely different path than we anticipated.

As already mentioned, it was two years before we realised that Jessica was developing differently than other children, our main concern being her severe lack of (or non existant) language and communication. As a family, we’ve been on an emotional rollercoaster over the last 4 years. I expect every family living with disbailty of any sort will go on that same journey.

ANXIETY was the first emotion I particularly felt. Andrew had a more laid back approach to Jessicas language delay, which I guess comes down largely to our personalities. I do suffer from anxiety, although I have learned to rationalise and control it. Andrews calm laid back nature, always balances things out a little.

FEAR, WORRY, UPSET – As I spent a LOT of my time on the internet looking for explanations as to why Jessica may not be developing any language skills, I became more and more scared. Especially as I went from typing ‘2 year old can’t talk’ to ‘three year old can’t talk’ into Google, even during the night as my anxiety was keeping me awake. I clicked on page after page and the explanations and advice I found, given to other parents with the same concern,  went from ‘be patient, give him/her time, some children develop at a slower pace than others’, to ‘take him/her to a doctor, they may want to test for autism’.

SHOCK, SADNESS – My immediate feeling after Jessicas very first appointment with a pediatrician who then referred her for a hearing test, concerned Jessica was actually lip-reading. I’d also went to that appointment alone, just me and Jessica naively thinking I would get a straightforward simple explanation and resolution. I left the appointment and rang Andrew to tell him how it went and I remember my head spinning as I spoke.

FRUSTRATION – My main feeling during the time then spent waiting for appointments. Hospital appointments for hearing tests, appointments with speech therapists, the frustration when the speech therapy did not go as I hoped. Not knowing the future. I said a lot in the beginning that I just wanted to know if Jessica would ever talk. I couldn’t handle the thought of not being able to communicate verbally with my daughter. Not knowing how she was feeling, or if anything was bothering her. I didn’t want to think of having only Makaton or sign language as a way of communication, I wanted to hear a voice.

RELIEF, ENCOURAGEMENT – Jessicas first word during speech therapy was ‘bear’, which she would say when prompted as her therapist sang ‘Round and round the garden’. That was the only word she would say for months, and often with weeks inbetween saying it at all. However, this was still no indication or guarantee at all that Jessica would develop language. Relief has been the most consistent emotion I’ve felt over the last year. But i have still experienced strong not so positive emotions amongst that.

ANGER, CONFUSION, DENIAL – I have asked ‘Why us’? ‘Why Jessica’? and I have felt eaten up inside with envy towards other parents. Especiailly when Jessica started nursery. I hated dropping her off and picking her up and seeing the other parents who weren’t faced with the emerging situation our family was. I have blamed myself, was it something which happend during labour? Is it something which could have been prevented? The first time autism was suggested, I catagoraically stated Jessica was not autistic, and was offened at the very suggestion. I would say I felt this mixture of negative emotions for the most part of a year. They have also been the hardest to deal with.

CALMNESS, CONFIDENT, THANKFUL, GREATFUL – The positive emotions I would use to describe my feelings since Jessica started school. Having a statement of special educational needs meant that Jessica could go to whichever school we want her too (as long as the LEA agree it can meet her needs), and by law, the school must provide the exact help and support Jessica requires. We chose the school which the LEA recommended, a specialist school for children with moderate learning difficulties and autism. It is actually part of a mainstream school, which Jessica still experiences being part of. This is without a doubt, the best decision we’ve ever made.

PRIDE, HAPPINESS – Every Star of the Week award Jessica brings home fills me with pride, every assembly, every comment in her home/school diary she brings home each night, and I would not ever go to her schools Christmas Concert they perform each year without a pack of tissues. Jessica is in a class with 7 other children, all boys, making her the only girl. Jessica gets picked up for school every morning in a taxi with two other girls. She brought home a letter one night a couple of weeks ago, from one of the girls mums inviting Jessica for tea. Last Wednesday night, Jessica went straight to her friends house for tea after school, and we went to pick her up at 6.00. I never expected that both me and Andrew would be sat teary eyed in the car as we listened to Jessica tell us how much of a good time she’d had. Jessica has been to a few parties since starting school, but we were worried she would never have a best friend or go to a friends house for tea. Just the usual things we all do growing up. We’re excited that her friend is coming to ours for tea this week.

And to bring everything up to date, thinking about tomorrow, I don’t know how I feel. In the beginning, I would feel anxious the night before an appointment, anticipating what the outcome may be. I’ve become desensitised to that. It is just another appointment. I’ve asked Andrew what he would like the outcome to be from Jessicas assessment. A diagnosis, or no diagnosis. He agrees with me. We would like a diagnosis. We feel it will help us to explain a lot of things to Jessica in the future, such as why we chose the school we did, when she could have gone to the mainstream school which is literally a minutes walk from our house. And help her understand why she has developed in a different way and at a different pace to other children. It’ll help us explain to Jessica who she is. If she doesn’t receive a diagnosis of autism, we’re expecting the alternative explanation to be a ‘learning disability’. Jessica is a visual learner and requires visual aids and prompts to reach her potential, which indicates Jessica does have a learning disability, but it doesn’t explain the behaviours. So if we don’t receive a diagnosis of autism, I’m expecting a level of frustration to emerge again.

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