Life in Pieces

“If you do the fish puzzle we can go home.” Two of us had been coaxing H to do the set puzzle on and off for over an hour.  We had to complete the puzzle for a specialist assessment. The referral we needed could only happen if it was completed. This was our second attempt in a month. H speedily and correctly placed all 3 fish in less than 30 seconds, smiled and headed for the door. At that point I laughed and realised the only bribe I hadn’t used was to get out of there! Being a mum is full of anxieties, stresses and joys. Being a special needs mum is all of these things x10! 

The needs of our eldest were not obvious in the early days, he was a happy, content baby. He had lots of attention and our lives quickly revolved around his needs, naps and smiles. Looking back there were lots of things that could of been ‘red flags’ but you’re never sure if it’s personality or something they will just grow out of. They can’t learn everything at once! 

Accepting your child has long term needs is a journey – a process involving lots of tears, questions and doubts. There are different stages on the journey and I would often question myself, feeling guilty as though it could all be my fault. It’s hard for us practical people when there are no answers or reasons for things.

A jigsaw puzzle…

It helped me to see the diagnosis journey a bit like a jigsaw puzzle and you never know when a piece will fall into place. You don’t have to know everything all at once and you can get to know your child and their needs piece by piece.

One of my puzzle pieces fell into place when our middle son was born, H was 20 months old. I had been prepared for him to be excited and ‘helpful’ or to be cross and jealous. H was neither of these things! He completely ignored him and treated him like an obstacle. I have none of the cute sibling photos where the older is holding, kissing or seemingly suffocating the youngest! There was a glimmer of hope when at 5 months in H gave him a spontaneous hug and i was so glad we both saw it as it then went back to the ignoring for quite some time. 

First hug!

Another puzzle piece fell into place when our speech therapist sent an email mentioning that H had a disordered profile and he wasn’t going to just simply catch up. It was then we started the process to get more help, assessments and support.  When H was 4 years 9 months he got diagnosed with autism spectrum disorder. It was a 3 hour appointment and felt a cumulation of 2 years worth of uncertainty. Although in this instance the certainty was not the preferred option. 

My blog is called #notwithouthope as although this was such a tough time, physically and emotionally exhausting, there was still hope. There was progress – very small but progress. I got better at managing appointments and started to see the funny side when they were a disaster. I had another boy and new life shows hope in all it’s finest.  It’s been such a comfort to believe in a creator God who sees the whole picture of the puzzle and has a plan. Anyway school run calls!

Cover photo by Markus Spiske from Pexels

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  • Kate colley
    Posted 4th October 2018 at 9:55 pm 0Likes

    Really lovely Ali.x

    Posted 6th October 2018 at 6:38 am 0Likes

    Ali, well done – this will be an enormous help to others. Keep on keeping on!

  • Angela Seivewright
    Posted 17th October 2018 at 6:57 pm 0Likes

    Thank you so much for sharing Ali. xx

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