Life as a SEN mum

I’ve had a few people reach out recently and ask about the referral process, so hopefully I can shed a little insight.

This is our journey. Compared to some it’s been straightforward, still by no means easy. There will be part 2 coming where I’ll discuss in more detail some of the signs to look for and more on what happens during the assessment period.

James’s Journey

I’ll be honest, as a baby, there were never any signs, after being regularly seen by various departments at the hospital for unrelated issues, regular Health Visitor appointments etc, everyone agreed he was developing as expected and hitting all mile stones. When he reached 2 and still wasn’t talking I raised questions, an initial assessment was done, but other than his speech there were no other concerns that would lead to a referral.

At 25 months he started nursery, while there were a few areas where he was a little “behind” there was never any massive concern and we even managed to toilet train despite him being totally non verbal.

Fast forward to preschool and it became quite obvious that the social aspect of nursery was too much. Thankfully after a quick discussion with his HV she managed to get the ball rolling. The first step was to have a hearing test, which as expected was perfect (they even commented on how he picked up on instructions really quickly). As such a referral was then made to Speech and Language and the Community Paediatrician. I’ll talk more about speech therapy in a future post, but the experience wasn’t great.

Finally in the May of 2018 we saw the paediatrician. We waited approximately 9 months, which in all honesty is really quick. On average there’s a 2 year waiting list to even get that first appointment. After the initial appointment she wanted to see James in nursery and arranged a meeting where nursery staff and the speech therapist were also present. There and then she diagnosed James with Autism Spectrum Disorder.

Charlotte’s Journey

Unlike James, I started to have concerns around about 6 months. Part of me did wonder whether I was looking for things that weren’t there, or whether I was just simply spotting every little thing having already been through a diagnosis. The fact she never really smiled or laughed as a baby rang alarm bells, as for the lack of sleep, that’s something we are still struggling with. At her 12 month review I raised concerns about the way she walked, the fact in the month prior to that we’d managed a whole of 6 hours sleep. I wish I was joking! But that was our monthly total. I also had concerns about the fact she didn’t really show any interest in anything, she didn’t want to play, no interest in music, books, or even baby tv. The only things she did do was scream, bite, throw things and eat (about the only thing that wasn’t an issue). But the HV tried to tell me this was normal.

In early 2020 I finally got a GP appointment after years of sleep deprivation. The GP agreed to put in a referral. IMPORTANT: double check exactly what is put in a referral before it’s submitted, I took the doctors word for what she included but when a month later I received a letter saying the referral was refused I was so angry to find that rather than submitting an ASD referral as discussed she had submitted an ADHD referral. Yes we are expecting a referral for ADHD in the coming years and school are already preparing for this, but at 2 years old this was never going to be accepted.

Thankfully at the same time she was in nursery and they suggested contacting the GP for a hearing test. They’d noticed her speech was no longer developing and that she didn’t respond to her name. Again this came back absolutely fine, although they did pick up on her body language with certain sounds, as well as her lack of ability to concentrate for any time at all. Thankfully a couple of months later she was seen by a Speech Therapist, who after one session saw exactly what I’d been saying and said she would put in another referral. 10 months later I had a call to say the Paediatrician had a cancellation for the following week if we could make it. I’ve never felt so sorry for anyone. The poor woman, thankfully well protected due to ongoing covid measures had to deal with Charlotte on full form. We got to a point where the appointment couldn’t continue unless we were willing to let Charlotte seriously hurt herself, but she was confident she could give a diagnosis.

2 days later I received a call to confirm some more details and then we received the diagnosis of ASD and hyper mobility (explains the strange walk).

So what now?

Don’t be fooled into thinking that a diagnosis is somehow the holy grail. We now have a whole load of mental health problems, schooling issues, and early appearance of those teenage hormones with James. As for Charlotte, despite being a complete social butterfly, at nearly 5 she has little self awareness, still in nappies, no pain threshold, and as for sleep I think I’ve forgotten what it is.

It’s still a fight, it will always be a fight. But it’s one step in the right direction.

Tips if you’re waiting on referral/or assessment

Keep a diary, or log of all your areas of concern, any questions you have etc. It can be overwhelming and if you’ve got everything written down it will make the assessment easier.

If your child is at school/nursery make sure that you’re kept up to date with any observations they make and again request that all these are officially logged. They’ll be contacted anyway, so if they’ve already got lots of observations in writing then again it will help things to go smoothly.

Don’t stop fighting. There may not be much you can do while you wait for an appointment. But that doesn’t mean your child has to continue to struggle. Speak to anyone who works with your child and make sure they do everything it takes so that your child can thrive.

*If you have any questions, leave them below or email me*

Kate

❤️❤️