FRIDAY GUEST POST: Liz’s Story

I know we’ve gotten away from our special posts for a bit. So here is to the return of FRIDAY GUEST POSTS. Our Friday Guest Post comes from Liz over at Cat on A Trampoline (both on FB and http://catonatrampoline.wordpress.com/ ) She’s an amazing mom and friend. Please enjoy and give her some love!

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I had imagined a water birth with fairy lights, and music. I had done pregnancy yoga, I had read up. And I had it all planned out. No pain meds, no intervention, no medical meddling. I would get my baby girl out into the world. I was strong, I was all she needed. It would be tough, but totally worth it. I would bring her up from the water myself, Hubs would cut the cord and we would just hold her together and become a family.

 

It’s funny how things work out. Melon was actually born by emergency Caesarean section. 3am in a crowded operating theatre that was flooded with light. I was delirious from pethidine, fear and a sense that I had failed the first hurdle of motherhood. There was noise, confusion, she took a LONG time to breathe. I didn’t get to hold her for at least 30 minutes, when I was in the recovery room. Then, a sudden moment of quiet. I attempted to breastfeed for the first time in my life. Melon latched on with ease, a midwife said “she’s a natural breast feeder”. The staff had drifted away, Hubs had gone for a coffee. I looked down and all I could see was a tiny head with two HUGE blue eyes wide open, staring straight ahead, suckling with a strength and intensity that astonished me.

 

Right from the start Melon challenged my perceptions, forced me to let go of preconceptions of what would and what should happen, forced me to accept a different version of how things should be. And right from the start I loved her.

 

When Melon was around two, it became clear that her communication wasn’t developing along “normal” lines, and that she was showing little interest I other children. She could say a couple of words but no more, she didn’t point, she didn’t initiate conversation. Yet she was a happy, funny, affectionate little girl who showed so much curiosity I the world around her, especially the natural world. She was gentle, even tempered and won the hearts of those around her without even realising it. She was still so young, we didn’t want to pigeon hole her, to invite a carousel of professionals into her life with their targets and their interventions. We wanted her to have space to grow and develop at her own pace.

 

When Melon was three, the communication differences were still there, they became more evident as her peers themselves developed. Melon could speak, but she had no interest I interaction, she just didn’t seem to see the value in it. We hired a private speech and language therapist who began to work with us and with Melon’s nursery on the Hanen techniques and on various other strategies. Melon was given an IEP. A team began to gather around her in the way that a stone gathers moss: first just us, then nursery staff, then speech therapy, then the area spec needs co-ordinator for early years.

 

Melon turned four. By this point our IEP team had grown again to include educational psychology and staff from the primary school where Melon would be starting in September. We began the process of getting a Statement of Educational needs. The professionals were doing with Melon everything they would be doing with an autistic child, but we still didn’t have a diagnosis, mainly because Melon had been diagnosed with glue ear which threw doubt on the reasons for her communication delay (her only real “symptom” at that time).

 

Also though, Hubs and I had fears about autism. We didn’t know what it was, we knew what we THOUGHT it was, and that thought scared us. We said things like “she’s affectionate and she makes eye contact”. “She laughs” “she manages change”.

I can look back and laugh at myself now.

I can applaud the way that my little girl, for the second time in her life, has forced me to stop and examine my preconceptions and view of what is “ok”, has led me to love and embrace something that I thought would scare me.

 

Two months after Melon’s 4th birthday her sleep problems began, wth a pattern of repeated night waking that went on every night for 7 months. Melon’s mood deteriorated, she had several meltdowns a day, she developed marked sensory seeking and aversion behaviours. Our usually happy little girl was in distress every day. It was painful for us and it must have been devastating for her. We made a decision to push forward for screening and diagnosis. Thankfully, the glue ear cleared itself without surgery, and Melon finally got her diagnosis in October 2013. She was 4 1/2.

 

Melon is five now. She is in mainstream school with flexible 1-1 support throughout the day. She had a 5 month course of Melatonin that helped to bring her sleep difficulties back under control, which transformed life for all of us. Melon has made huge strides in emotion recognition and understanding, in herself and others. She has developed a strong set of coping skills that allow her to manage her anxieties throughout the day, mainly centred around using desirable sensory input – humming, using tactile sensory toys, staring at lights. She remains a gentle, curious and affectionate child. Communication is still the main area that we are all working on. Melon is talking more, and more often. She uses delayed echolalia with a confidence and sophistication that blows me away. She stores up sentences the way that I store up ideas for blogs and posts and she whips them out at the right time, always in the right context, always with the desired effect. She has a small but growing amount of self-generated speech. Melon is increasingly recognising the value of using speech to communicate her wants and needs to those around her, and her eye contact has increased significantly. Significantly, since starting school Melon has shown a lot more interest in other children, learning their names, initiating interactions, and when her ideas of how to do this don’t work she stops, steps back and studies the situation for a while to form a new plan.

 

We we still don’t know what the future will hold. We still worry about how well we will be able to equip our little girl with the skills she needs to live independently. We don’t know if she will be able to remain in mainstream education in the long term. Yet we are no longer scared. We have accepted Autism, we have embraced all the ways in which it enhances our little girl’s experience of the world, whilst at the same time trying to support her to navigate the challenges that throws up. We are stronger, our family is stronger. Autism is part of Melon, it will be forever, and it will be part of our lives forever too. It has become our normal.

When we look at the future we don’t know what it will look like, but we know it will be rainbow-colored.

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So true and honest and heartfelt!

 

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