5th October 2022

I’m not sure where to start, I’m very anxious writing this, but the best thing that has happened to me so far on this journey was speaking to someone about it and feeling like I wasn’t alone, so hopefully this reaches and helps even 1 person, not to feel so alone and helpless.

I knew from around the age of 2/3 that Ella had different needs and acted differently to her sister, I mean I know all children and siblings are different, which is what I kept getting told. I questioned her behaviour with her nursery teacher at the time who said she wasn’t worried and hadn’t noticed anything. It was a general term in the family that ‘Ella is Ella’ a bit wild. It quickly became clear to me as she was getting older, that actually, I know somethings ‘not quite right’ and I needed to follow my ‘mothers instinct’ which by the way is the most important thing I want you to get from this post, please follow your own instinct, and don’t take no for an answer, get a second opinion, third of fourth if you have to.

So Covid happened and due to Millie’s CF, we had to shield in our then 1 bedroom flat together, not even being aloud outside the front door as at the time it was very unknown what the effects would be with cystic fibrosis patients. At the end of lock down we moved house which meant moving schools for the girls. It was such a change for the girls and this is when Ella was finding it harder and harder to ‘mask’. A term I knew nothing about before I started researching, masking is basically hiding their symptoms which is more prominent in girls. When she was in year 1 and settled, her teacher gave me the biggest relief by actually noticing Ella’s behaviours and seeing what I saw for herself without me mentioning anything, which I will be forever grateful for.

So I spoke with her teacher, who explained how Ella was when she spoke to her, she would gaze over and often repeatedly blink as she didn’t understand or know what to do, she was also refusing to go to school with me in the mornings, which has been honestly so difficult. So I arranged a meeting with the schools SENCO, who said it sounded like sensory processing disorder. My next steps were to speak to my gp (which I later found out the SENCO could have done it himself) to do a referral for sensory processing disorder, along with adhd, dyspraxia and autism. Ella is now on the waiting list for all of these, the school SENCO and her class teacher had to fill in forms and send back to them, them being occupational health. Anyway this was back in February, I now have just had a call to arrange her dyspraxia assessment next week, and a sensory processing disorder webinar in a few weeks time.

Ella started year 2 in September, with her new teacher (her year 1 teacher has actually left the school 😭) But I have had a meeting with her new teacher who is actually doing a lot to try and help Ella, shes now supposed to be taken out of class 3 times a week for phonics and also a communication and maths interventions. I have to keep checking to make sure the school is keeping to this as often something starts and doesn’t carry on. I’ve been trying to get an appointment with the SENCO since the first week back at school and still have had no responce which i’m not happy about.

So a few weeks ago we went for Ella’s dyspraxia assessment, which took around 90 minutes, I thought she did well and the lady doing to assessment made it as enjoyable as she could for Ella which was great, she did mention after seeing Ella 10 minutes in that ADHD might be something to look into, which I explained shes on the waiting list for. She did a few different things like put pretend coins into a money box, thread beads onto string which were both timed, also throwing and catching, using a knife and fork, putting on socks and shoes and standing on 1 leg.

Then yesterday Tuesday 4th October, I got the phone call with the results and Ella does have dyspraxia. The occupational therapist who did the assessment has written up a report, which she now sends to a paediatrician who we have to see to get the official diagnosis, out of 100% on her fine motor skills she scored 2% so that shows how much she has been struggling. A copy of the report is also being sent to my gp, the school and me. In the report she as put recommendations of things we can do to support Ella so once I have had a read I will share them with you on another post.

Leanne