Jun 032013

In the Back to Bounce post on 13th May last year I said I met a lady who works in the Sunderland Children’s Sensory team for Visual Impairment, and she offered to do an assessment of Jack at our home after meeting at the Bounce session.  

This led to three further home visits (one per quarter) until I returned back to work February 2013, and monthly visits at nursery since then.

The main purpose of the sessions (approximately one hour each), has been for the lady to build a relationship with Jack and check he is meeting developmental milestones.   Until recently, they’ve been fairly informal – sitting and playing with toys, jigsaws and books and having a chat, and Jack has enjoyed the attention!  The lady also left various toys/jigsaws for Jack to practise with between our meets.

At the end of April, we were informed she has arranged for a Specialist Nursery Nurse to visit Jack in nursery on a weekly basis to support him with his development.  He has three targets as follows;

  1. To look, together with an adult, at an object/visual prompt during a conversation  (use feely bags of objects, picture books, pop up toys.  Encourage Jack to give eye contact when naming objects and pictures)
  2. To understand and name familiar objects  (reinforce names of everyday objects, give Jack opportunities to name objects independently)
  3. To use everyday objects correctly with an adult e.g. brush hair  (use the everyday objects in the feely bag and demonstrate how to use/play with objects correctly.  Encourage Jack to join in role play with the nursery)

So far, feedback has been that he needs quite a bit of encouragement with the tasks, and when speaking he tends to use single words with a quiet voice.  He also misses some beginning sounds e.g. spoon is ‘poon’ and shoes are ‘oes’.

Dad and I have been having regular conversations with the nursery about Jack’s progress and they have confirmed whilst he is one of the quieter children, they’ve noticed the more he gets to know people, the more confident he’s becoming.  They have not been concerned with his progress so far, but are keen to work with the Nursery Nurse to help Jack’s development however they can.

We’re very pleased that Jack is receiving this extra support as with him being our first child it’s difficult to know what is normal for his age, and how his vision may be impacting him.

Jack also had his 24-30 month Health Visitor appointment today.  She picked up on Jack’s speech too – he was very good at jigsaws but wouldn’t point to or say the names of any objects in her books (which I know he knows).  He did start to talk more towards the end of the visit but mainly individual (rather than linked) words.  Based on this, the fact he has had regular colds/a stuffy nose since he’s been born, and the fact I (Mum) had problems with my ears/nose/throat (grommets in, adenoids out, tonsils out) when young, she suggested Jack has a hearing test to help rule that out as an issue.

We’re very interested to hear experiences about extra support you’ve had, and/or how nystagmus has affected your child/children with nystagmus.

  2 Responses to “Extra support for Jack”

  1. My daughter was diagnosed with Nystagmus at 3 months old. They originally were worried she may be blind, as she could not track light at the appointment with the pediatrician. They sent us to an eye specialist at the children’s hospital. After ruling out blindness, they checked for a brain tumor by giving her an MRI. Luckily she did not have one. They also tested her for albinism but she does not have that either. We don’t know why she has it, but she does.

    I was really worried at first, but feel better everyday. She is 18 months now and can function well. She is hitting a lot of her milestones. Her fine and gross motor skills are a little behind, but we have an eye therapist that works with her as well. She is a ball of energy and we’re so happy she’s in our family

    Thanks for your website. It’s Great.

    • Thanks Brooke. I really appreciate you sharing your story and am glad your daughter is doing so well. Jack is also a ball of energy! We love him so much.

      Claire x

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