Meet my muse

In my introduction, I mentioned that I have a 6 year old with learning difficulties. Or disabilities. Or Special Educational Needs - whatever title you wish to use! I never quite know what to say as to us she is just her, and she happens to find learning, interacting, using social skills, talking and lots of other things that we take for granted as normal or easy, incredibly difficult.

We have recently been supported by a Family Link Worker. On her last session with us, she told me that I do a fantastic job of normalising and minimising life with a child with a disability. I know I do this, and it is to my detriment sometimes, as even close friends and family probably don't realise the full extent of what we've been through. I intend to be open and honest on my blog - I would be doing all families who have a SEN child a disservice if I gloss over reality.

So to my muse. E (I will not be using her full name on a public blog) was found to have delayed speech and language at her two-year check. At the time we weren't too concerned as she was a third child with two older sisters who did a lot of talking for her. A lot! Our frustrations with the NHS and systems you have to go through started here, and despite being a NHS Nurse and a Midwife at the time I was surprised even then at how poor care could be. 

We had a long wait until E could start Speech and Language Therapy (SaLT), but once she did it was quite apparent that I was learning more about speech problems than she was learning about how to talk. We were referred to a Paediatrician, and seen at the local hospital's Children's Centre. 

There followed a couple of years of to-ing and fro-ing from various Health Care Practitioners who basically scratched their heads, told us that E's problems were complex but they weren't sure what her actual diagnosis was. We were told in one clinic appointment the year before E started full-time education that she would need a Statement of Special Educational Needs, and at the next we were discharged from all care. E started Reception with no support, and helpfully there had been an error in handing her over from the Community NHS Teams to school, so they had my word to go on and nothing else.

Reception year almost passed by, and I will never forget the relief when her teacher told us at Parent's Evening that she could see what we were seeing, and she was concerned about E's educational needs and social skills. I really thought at the time that it was the beginning of addressing the problems - and while it was the beginning, I certainly didn't expect E to be going into Year 2 still without diagnosis. E's school put into place many systems of support, but they were as much in the dark as we were.

It took a formal complaint to the local hospital to get E back into the system, and to be seen by a Paediatrician again. At first we thought we were on the right track, but the last year hasn't seen much in the way of progress. We know that E's chromosomes / DNA are all normal. That's fantastic as it rules out syndromes and fragile x. We are not sure if she has Autistic Sprectrum Disorder (ASD) or not; there is not enough evidence to say she is autistic, but likewise there isn't enough to say she isn't. She does have some autistic tendencies, but we are hoping that as her Speech and Language improve, then the knock on effect of improving social skills, being able to read and write well will improve the ASD tendencies.

Most recently, we have been referred for a MRI of E's brain. We were seen by a Specialist Consultant Audiologist (after a long battle with local ENT and Audiology clinics who couldn't make up their minds if E needed grommets, hearing aids, a psychologist or nothing!) and he found that while E's ears work normally, when the sound signal hits her brain stem it is significantly delayed. He discussed E with Great Ormond Street (GOSH) who recommended the MRI scan. Another error occurred by the local hospital when they failed to refer her to a nearby hospital for the scan, and so another complaint by me, which led to all of E's care being transferred to GOSH. I am so glad, and yet so guarded about getting excited that we might get somewhere as we have been so let down by our local hospital. We have recently discovered some potential heart problems too, which I am keen to get diagnosed 100% ASAP, the Paediatrician we saw couldn't tell me if this is linked to the brain stem delays or not.

So, now you have a brief overview of E's problems - Speech and Language Disorder, Hyperacusis (over-sensitivity to certain frequency and volume ranges of sound), possible Auditory Processing Disorder, possible ASD, anxiety and Sinus Arrhythmia. I should tell you about her strengths.

E is such a kind, loving girl. She gives the best cuddles and when she was finally able to say "I love you Mummy" I thought my heart would melt! She loves horses, and although she is a bit frightened of our pets she is really gentle with them. E is a brilliant big sister to our 2 year old, and adores her two bigger sisters (more about them in a different post). E adores Minnie Mouse, and has just started fantastic role playing, I think prompted by her little sister.

That gives a brief summary of the last 5 years. I could never begin to document the stress, the fear, the anger of dealing with E's so-called carers. We have been left so alone with the heartache of watching our girl struggle, with a making-it-up-as-you-go-along approach to parenting a child with complex difficulties; my 100 Mile Running Challenge will hopefully bring something positive out of our experiences.