We’re on a journey, its not always a smooth road but we make it as wonderful for our little girl as we can.
we have a delightful 8 year little girl. Struggled in preschool with concentration, discovered she has visual impairment. glasses help her. It was discovered due to quite weak eyesight she had pale optic nerves around her eyes. This lead her under consultant care of hospital. She has undergone many tests with school, hospitals and local hub services. Not all results have been discovered with us yet, even though these were almost 12 months ago now!
At 6 she was diagnosed with borderline adhd, medicated with medikinet and melatonin.
However due to discovering she her pale optic nerves, she had many tests at childrens hospital. The most recent a cognitive assessment with Neuropyscology Team.
We have just received their report via email, our appointment isn’t until December to discuss these outcomes!
The report summaries she is a 8 year old with hypomyelination, optic atrophy, reduced visual aculty and adhd. Her overall 1Q score was consistent with learning disability FSIQ 60, <1 percentile.
Findings of current assessment suggest that her overall intellectual abilities fall into learning disabled range and her memory abilities are in line with this.
It has recommend to school SENCO and School Educational Psychologist that an EHCP may help.
Although we do generally understand the content of her assessment report. Some of the wording and not having it explained was daunting.
The school are brilliant with her. She is not entitled to funded support currently but has support in place indirectly.
The school SENCO communicates frequently with us and we know they will work hard to gather evidence for her EHCP, as will we.
We have no issues with the amount of support from school.
It has been a difficult road of parenting, we have 1 older child and 1 younger. Neither have health or development issues. But we find ways to parent them all the best we can, we seek for them all to have the same opportunities within their own capabilities.
We felt this diagnosis has been a long time coming. Although we started the journey when she was 5, receiving her borderline adhd diagnosis at 6.
So our questions are
- Is it normal to feel a little confused by the terminology used in the report.
- Although we know she had learning difficulties, to see it in writing being more challenging than we thought was upsetting. For it to summarised as her having Learning Disabilities and intellectual abilities that fall in the learning disabled range. What does this actually mean?
- Is she classed as disabled due to this report summary? I ask this in terms of the support we could seek for her?
- We never thought to come to mencap, so is this the right place to look for support, guidance and advice.
- Is there more we can do as parents to gain evidence for her EHCP?
- I get most information and help for the Internet. But be good to get parent support that have gone through similar too.
- I am unable to work full time due to the amount of appointments she undergoes. And due to her needing me before and after school. Is there entitlements we can claim for her, so we can provide more support for her. Financial support may help us provide her with more outside clubs and activities to stimulate in a different way than school can.
Through all this she makes us smile every day, even though some days can be hard.
Her disabilities aren’t socially or physically obvious to others. And although generally her behaviour is good, she can be perceived as misbehaving when she doesn’t listen to rules (very impulsive due to her adhd), has lack of concentration, is like a whirlwind and can come across very immature.
To us she is unique and wonderful, we wouldn’t change a thing about her. Just want to give her the best start possible. So hope you can help point us in the right direction. Thank You