Meet Saoirse

Saoirse

Saoirse

Saoirse (Ser Sha) is a strong and free-spirited girl aged 8 who was born in Limerick in the Republic of Ireland but we now live in West Yorkshire, UK.

She was born healthy, full term after an uneventful pregnancy, after a quick labour she arrived as an unplanned home-birth a healthy weight of 8lb. 

At the hospital we went in to stay overnight Saoirse refused the breast, I gave her a bottle though and she took that without any problems.

Her examinations at hospital picked up on some minor deformities, missing cartilage in top of one ear, slight tongue tie and a strawberry birth mark was noted on her lower back.

At 12 weeks old Health Visitor measured her head and it had fallen off the chart this was Microcephaly (Small head) and a slight Spina Bifida Occulta was diagnosed, she was slow to develop in all areas, she was slow to sit unsupported, she would make eye contact but often had a vacant look on her face, she didn't really babble, she didn't crawl but like tummy time she started to cruise using furniture and her walker at 16 months.

She was 18 months by the time she walked with holding hands. 

She had access to early help in the Republic of Ireland OT, SLT, Paediatrician, Physiotherapy.

At 15 and 18 months she had Seizures, the first seizure lasted 90 minutes and she was nearly sent to ICU this was because they couldn't give her the medicine, she needed quick enough and they miscalculated her dose by weight etc luckily, she made a full recovery after 4 days in hospital, we were told she might have seizures again in the future but she has been seizure free in the past 3 years.

Saoirse's main struggles are Mild Intellectual Disability, Autistic traits, PDA and Social and Communication difficulties associated with Autism including sensory issues, awaiting a fresh Autism assessment. She is incontinent both bladder and bowel, she wears pull ups both day and night.

She was diagnosed as Precocious Puberty (Early Onset Puberty) she has a loaded rectum and suffers from severe constipation on her MRI and Ultrasound scan for the precocious puberty they found she has a Bicornuate Uterus another deformity. 

Trio was diagnosed in 2018 after a second attempt at Genetic testing she was tested for Rhett's and Angelman's Syndromes when the Microcephaly was diagnosed but both came back clear. 

Saoirse struggled at creche, nursery and down to several behavioral difficulties and ADHD type traits she was very hard to get to do anything so I electively home educated her for 3 years, she has aggression and this is often quite violently aimed at myself as her main caregiver, this is down to frustration and poor emotion regulation skills, meltdowns and tantrums, panic attacks and selective mutism have also arose over the years from 5+.

She has had aches and pains but this was put down to growing pains, she often mentions headaches and dizziness so this does need further investigation, she toe walks and she is clumsy, I think she is hypermobile and possible Dyspraxia so awaiting further consultations. 

I made the decision to send her to school, she now has got an EHCP in place and is in a mainstream school with a 1-2-1, she is doing well and it's nice to see her progress on her own path, and her self-esteem is growing and she is dare I say it finally thriving.

Her strengths are she makes friends quite easily given her challenges and she is always smiling, she calmed down greatly over the last year since she is having her medication to delay puberty.

She has a great affinity to animals and babies and she shows ability for empathy and compassion for all things as she always looks after people who have got hurt or upset.

She has expressed her desire to be a dog walker, horse trainer or pet sitter when she grows up.

She loves cuddling her Guinea Pig and we are looking at options to get a therapy dog and this is something I will be trying to get for her over the next year.

She is very good at playing video games and loves Roblox, she also enjoys watching movies and does get fixated on certain characters and likes to watch the same ones over and over again, she does get on well with her big sister and they play together building dens.  

Dani Hernandez