Our Boy


Isaac

- Sensory Processing Disorder

- Anxiety

- Developmental Co-ordination Disorder

- Social Communication Disorder

BUT NOT AUTISM!!

Isaac was born at 41 weeks after a tricky pregnancy (long story), horrendous labour and a terrifying forceps delivery. What could go wrong…went wrong! But it was all ok in the end. He was an almighty 10lb 3ozs.

I was a nursery nurse. Being a mum would be a doddle for me, right? I planned to be an earth mother – breast feed, use natural products, water birth…the lot. So right there is perhaps the explanation to why I felt I had failed.

From the moment I laid my eyes on my boy, we were in love. He was a gorgeous baby. His skin was perfect. He had fabulous black hair. Everybody said how beautiful he was.

But I was struggling. My plan wasn’t working. He struggled to latch. I tried desperately for him to have my milk. We managed 2 weeks until I bought a breast pump. He took it from the bottle straight away and I was heartbroken. The family were delighted because they could help feed him. But I recall saying to the breast-feeding lady “It’s as if he hates being next to me”. I expressed milk for the best part of 5 loooong months. And he was thriving.

He wasn’t an ‘easy’ baby. He preferred being put down to being cuddled and passed about. He didn’t really settle for us. We worked out that he would fall asleep to rock music and loved a car journey even though it made him sick. He would however have 2-hour sleeps at nannas house whilst I was at work. It was deadly quiet at Nanna’s house. No distractions.

When he was older he began to fixate on things. Clocks, keys, trains, or anything with wheels. He had a toy television that had tools for dismantling. He would spend HOURS doing this….at less than 18 months old. I prided myself on how well he could concentrate at such a young age. He walked and talked ‘early’ and I being the dutiful nursery nurse taught him Makaton. We communicated from around 5 months old. He is quirky. I love that.

Strong willed toddler came next. He was always angry!! Frustrated with life and toys and people. But he was so clever and now he was sleeping well. So, it wasn’t so bad.

He hated nursery; he found it so so difficult to share. More so than his peers. The staff would make sure the trains were out on his days as he was obsessional about them. He preferred staff interaction than that of the other children. He still talks about nursery days and I often wonder how he recalls events from back then. He is different.

His beautiful little sister arrived when he was 2.5 years old. She was a completely different baby….so relaxed and calm and didn’t peep until she was 4 months old!! We didn’t know we had her. Second child though, always easier, aren’t they?!! She’s my angel.

School – The first few years were great. He had lovely warm teachers who nurtured him and ‘got him’ – They’d often comment to me about his knowledge and one teacher said “your home must be like a classroom” …I looked confused as she said this as my house is anything but. We loved to read but I had no idea where most of his knowledge came from. It was as if he had a photographic memory. AMAZING.

As Isaac entered year 2 we were concerned. He was distressed a lot of the time. We’d speak to his teachers who revealed (and still say) that he is fine in school. He would meltdown upon leaving the school gates with very distressing results. We noticed he was picking at his eczema…. then we realised that he was picking his healthy skin. It was an outlet for him. He came home from school one day with scratches on his arms. I was alarmed and asked him about them….”I feel better mummy, when I bleed”. He was self-harming! Never have I felt such a failure and so alone in all my life.

This is when Kris and I sat and made a list of all the things we were concerned about. It took us a few days to list them and are still adding things to this day. To see it there in front of us was so upsetting. I had said it to people rather flippantly in the past “oh, he’s autistic”. I now realise that that was me trying to accept what was staring at me.

We spoke to the GP and the school nurse. At this point I was on the edge of my nerves and it was causing us marital problems. Isaac’s issues were causing us to struggle. It was heart-breaking.

We waited forever for his referral to the paediatrician. In the meantime, Kris and I had done our research. We were Google doctors by the time we saw the paediatrician and had put our own strategies and coping methods into place. Kris had read that we needed to see the OT. We waited almost 2 years for this. They saw Isaac and told us that he does have sensory processing issues and Developmental Coordination disorder (Dyspraxia).

We wanted to see the OT because it was the sensory issues that were driving us batty. He hated being dressed, socks were a nightmare, labels were a no-no, shoes…. only on a good day, baths had to be hot, food had to go cold, children had to be quiet around him, but he had no volume button…. classic symptoms of High Functioning Autism.

We were in luck…. because he has dyspraxia (!)…Wirral OT’s could help us with the sensory issues. We did the courses. We learned a little.

They highly recommended an ADOS assessment. We waited another year for that. It came back inconclusive because he ‘refused to take part in some aspects of the test’ – classic symptom of Autism – fear of the unknown.

He was still achieving academically. No problems at school. Meltdowns still occurring at home. Self-harm still occurring at home. Self-loathing still there.

We discovered something called 5HTP. It is a vitamin. It releases serotonin. We found out the correct dosage and we order it in for him. The difference was measurable. People had noticed a change in him. More confident, chatty, happier in fact. The paediatrician is ok with this.

Then we had to apply for a high school place. He knows where he wants to go. He liked the clean lines, the clear notices, the way the school flows. We applied. We didn’t get a place. What should have been a time of excitement and thinking of the future quickly became a time of sadness and regression and disappointment. The day we told him that he didn’t have a place was like watching him unravel. We’re still on it. We’re appealing and hoping for the best outcome for our boy. We won’t give up…ever.

We don’t have the Autism diagnosis…but we treat him as though he is. It’s the only way we know how. And for us…it works. He is due to be seen again by the paediatrician in April.

Our boy is WONDERFUL. He is funny (but don’t laugh at him cos he hates it!), so, so clever, smart, has a memory that baffles me every day. I love him, we love him. He drives us insane, he keeps us together. He’s a massive cog in our family wheel. And we can’t remember life before him.

Niecey x

#AutismAwareness #Spectrum #SpecialNeeds #HighFunctioning #Support #Autism

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