Life as a SEN mum

The misconception is that everyone is praying for a diagnosis as a way having some excuse for their child’s “bad behaviour” or to claim extra money.

Yes the number of children, and adults, diagnosed has increased but trust me, it is no mean feat to get a diagnosis, and honestly, as much as we wouldn’t change our children for the world. I’m Im sure I’m not alone in saying that we wish we didn’t have to go through the process of diagnosis and everything that follows. We do it, because like any child they should be entitled to access education and employment, as well as the chance to just live life to its fullest.

Exactly what happens after diagnosis is very dependent on age. Despite both James and Charlotte being very similar in age when diagnosed there were still a few differences.

One thing everyone will find is that you’re given lots of information in some form, with Charlotte it was a list of websites. With James it was a whole load of leaflets, that if I’m honest I don’t think I actually fully read them. Some of the information is helpful, and will provide details of any meetings locally that discuss various concerns you may have. Whilst some of it is just very generic. There is also a lot they don’t cover, so really don’t stress about them.

After James’s diagnosis he was referred to a disability Health Visitor, this is where we got most of the support and information from. She gave general information on techniques to deal with various behavioural and sensory issues, as well as more information on monetary help such as Family Fund and discussed claiming DLA. She also provided information on various groups that provide sessions, including things like craft mornings, horse riding etc, especially for autistic children. The specialist Health Visitor team are also able to help with any concerns around toilet training, although this we didn’t specifically need.

Charlotte on the other hand wasnt’t referred, purely based on the fact that by time she’d ever get to see anyone she would be turned 5 and therefore unable to see the Health Visitor anyway. Instead it’s a case of waiting for a referral to clinical psychology and a paediatric appointment to discuss referral to the incontinence team. One thing that was different this time is that we were given information to contact the hospital for a blood test, I’ll be honest I haven’t got round to it yet, I think there’s a few things that have delayed me arranging it. Partly that I don’t see her being able to sit still and have a blood test, partly because I think every parent subconsciously worries about the results.

The purpose of the blood test is partly to help in understanding more about ASD and ADHD and ongoing research to see if it can maybe be diagnosed early in those with family members who have a diagnosis by looking at genetic codes. If anything was picked up then parents are invited for blood tests, and I think that’s where the worry comes in, because deep down I know that it definitely seems to be common on my side of the family.

The tests can also pick up a risk of future diseases that are often genetic, such as certain cancers. So as much as I don’t expect it to pick anything up, it definitely is something which I do need to get round to booking an appointment.

Now that they are both in school our main port of call is the SENCO. We are extremely lucky that they have a brilliant SENCO, as well as lots of staff who have personal experience in their own families of children with autism, but also staff who have done additional training and degrees surrounding SEN children. So there is always someone to ask for advice, there is plenty of communication and there is always plenty of support.

Whilst James is still under Speech and Language, we’ve never had to have contact with other services. However, as I mentioned before, the likelihood is that Charlotte will need on going support from paediatrics, although as it’s still early days we are still awaiting a chat with the community paediatrician to see how she’s been getting on and exactly who she’s going to need to see in the future.

So I’m sure I’ll have much more information to share with you all in the future.