Autism, Family, Uncategorized

Cat and Mouse

I want to talk about how awesome the system is for parents who suspect their child may have additional needs. I really want to tell you what a flawless process it is, and how we were incredibly lucky to receive the amount of support we had to get an appointment with a Paediatrician quickly and efficiently. I desperately want to tell you all those things – but I can’t. They’re simply not true.

I had called the Health Visitor and arranged an appointment to discuss my concerns. She arrived the following week and we started to talk through what was bothering me. She was pleasant, took lots of notes and she heard what I was saying, yet despite all of the different concerns I had voiced, she only wanted to focus on Sawyer’s speech delay. What I didn’t know at that time was that this would be the first of many frustrating meetings that would lead to more frustrating meetings. The first of many appointments where I would talk and talk and someone would nod and write notes, hearing only the problems they wanted to hear and casually ignoring the rest. I wont say that any of the meetings were pointless because as you know by now, we eventually got to where we were going, but each one became more draining than the last. And what I also didn’t know at that point was that I wasn’t even off the starting blocks yet, and that it would be another 12 months before we got anywhere near any definitive answers.

A week after that first appointment, we followed the health visitor’s recommendation, and found ourselves at a speech and language drop-in organised by our local Children’s Centre. I still didn’t think that Sawyer’s issues came down to speech and language, but hoop jumping was to become a speciality of mine in the months that followed. The drop-in looked as I had expected  – a room with toys everywhere, children playing together, and a few mums stood chatting at the sides of the room. Sawyer gravitated to a pile of toys and I sat myself down beside him, talking at him about the toys he was playing with and trying not to feel too much like I was being judged more with each word that left my mouth. No sooner had I sat down, Sawyer ran off (I was midsentence but that wasn’t unusual) to a different part of the room. One of the specialists soon came over and started to ask me questions about my concerns. She observed Sawyer for a while and at a certain point he came running back over at me (not to me – very different) and started to grab at some other toys. Eventually it was decided that although she had seen he could give me good eye contact (he shot a couple of fleeting, accidental glances at my face) his speech delay was significant enough to be referred to Speech and Language Therapy.

The waiting list for therapy was a couple of months long and to be honest I felt frustrated at having to go at all, since there was no-one on this earth that would be able to give my son any type of therapy. I mean what would they do? Look at books with him? Flash cards? Not a hope. It seemed that nobody was understanding the type of issues Sawyer had. Surely he couldn’t possibly be the first child with these issues that had ever been through the system? He surely couldn’t be that unusual? In anticipation of the appointment we were asked to take Sawyer to a routine hearing test, which we dutifully attended. (As a complete aside, I was -still am – a working parent, and these appointments are all offered on weekdays between 9 and 5). The results of the hearing test came back clear (as expected) and we finally got an appointment through to see the therapist at one of the local GP surgeries.

The appointment was very different than the ones I’d experienced so far. This lady listened to me. She saw almost as soon as we walked in to the room that she could not get through to Sawyer with speech therapy because he wasn’t able to stay in one place for long enough. She recognised it. She saw it. This was the first moment that a health professional had shown an understanding of what I had been trying to say, and it felt amazing. I could have actually kissed her, and I’m pretty sure I told her so. She explained to me that often people are made to jump through these hoops and come to speech therapy because then it becomes her responsibility to fill in what was known as a CAF form. A CAF (Common Assessment Framework) is a lengthy form. It serves as a standardised tool used to conduct an assessment of a child’s additional needs, helping practitioners to decide how those needs should be met. She explained that this would be sent to the relevant people and that we would then be able to see a child psychologist for assessment. She said that she was satisfied he needed to be assessed and that she would fill in her parts of the CAF form and forward it to me to fill in the gaps. I left the appointment that day feeling like we were finally on the right track. Finally we would be able to get Sawyer seen by a pediatrician! A couple of weeks later she sent me the form for me to add my parts, and I sent it back almost immediately.

To this day I’m not sure what happened next. A month went by, and another month. I tried to call the speech therapist but the phone automatically went to a message box and I never got a call back. I contacted the Health Visitor to see if they could shed any light but they had no idea which stage in the process we were at, and who had been ‘holding the ball’ last. I called the pediatrics department directly and they didn’t even have Sawyer’s name on a waiting list. Each time I contacted someone I was told they would look in to it, and another week would go by without my hearing anything. And so the game of cat and mouse began.

At some point around this time, I called my sister. Trace had been a Clinical Psychologist for many years and I seemed to remember that she had worked with people with additional needs. I don’t remember exactly what words were used during that phone conversation, but I do remember incredibly clearly, the way that I felt and the realisations I had. I told her I was taking Sawyer to some appointments and that I was concerned by his lack of concentration in particular. I think I mentioned that ADHD had crossed my mind, but that I wasn’t really sure. I do remember very clearly thinking that she didn’t sound surprised, and that she was definitely positive about the steps I had decided to take. She listened to what I had to say, and asked me some questions that seemed excruciatingly relevant. Trace had spoken about some of Sawyer’s sensory issues in the past (rubbing head on carpet when tired, spinning around in circles) but at his young age, I had always put them down to – well, being that young age. She mentioned those issues again during that phone call, but for the first time (to my recollection) she began to relate them to something she had never related them to before. Autism. And that’s when it hit me.

She already knows.


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Innocent Until Proven Autistic

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