This week, almost immediately upon our return from Fran’s hospital stay, we received a letter from her Speech and Language Therapist to say that she had been signed off and was no longer under her care, but had been returned to the “main fold” of Addenbrookes Cleft Team centre care.
I’ve got mixed feeling about this; in one sense it is a milestone of a good sort. Fran, despite fairly significant speech issues, has never needed much SALT support because most of what she needed was only ever going to come with surgery, practise and time. In all honesty, i’m not sure we ever got much from those sporadic sessions that was any great help. On the other hand, it makes me slightly sad that cost cutting and centralisation has been what has probably triggered this change, rather than an actual milestone. The tiny, person based, slightly haphazard thing which was cleft support back in 1998 has morphed into something hugely different now – a whole team of people who work together to support and process babies and their parents from diagnosis, mostly pre-birth.
It was a very different thing for us; we found out about her cleft at birth and the midwives were, despite presumably having considerable experience of this, seemed at a loss. They asked us if we wanted to see her, there was a book of very uninspiring pictures of cleft children (these days everyone sees photos of Fran in our area, something that makes me warm and goo-ey inside) and there was little support initially. The surgeon normally came straight away but it was a Bank Holiday weekend and the midwives felt it inappropriate to bother him (he burst in in full sail on Bank Holiday Monday, bless him).
But there was H, the Speech and Language Therapist and as the letter that came this week showed, her first visit was on Fran’s birth day, when she arrived with soft squeezable bottles and help and advice. Her role, first and foremost throughout these 11 years, has been counsellor and in those first few years, she was an enormous emotional support. I will miss her – and i know Fran will too.
H was there when Fran got teased, with advice on how best to handle it, she has arranged group therapy sessions, listened to Fran read, opened her mind to HE despite initially being very concerned. She was patiently reassuring when Fran still had no B or P sounds at 6 years old. Because of that support, i was able to be more relaxed and i still remember the thrill of another child saying “Fran you can say my name with a P not a C at the beginning!” when it finally happened. With Fran we’ve been through a Speech journey that revolved around how to do these strange sounds that should be so easy – it has been a long journey but perhaps because it was there from the start, with our first child, i don’t know if i quite noticed it. I seemed to adopt a lazy bugger approach to it and hope it would work. There is still some way to go, but mostly it has. Certainly it bothers Fran not a jot, which is something to be proud of i think.
It was strange to find, with our second child, that we had Speech and Language problems again. Maddy failed her 8 month hearing test, with an HV gently telling me she appeared to be deaf, despite her whipping her head round to look at Fran who had made a noise with a pencil behind us. Maddy didn’t have problems speaking, she chose not to speak, but i was very slow on the uptake. I think now it would be obvious. Maddy chose not to go up or down stairs until she could do it properly, chose not to eat solid food till she could do it herself, chose not t interact at all. Maddy didn’t speak – and i thought she couldn’t – but in fact she didn’t want to. She was a little like the child who doesn’t speak until they are 6 and then one day asks for someone to pass the salt (lol). On being asked why they’ve never spoken until now, the child replied “the food has always had enough salt on it until today.”
With Fran, we experience a child who was desperate to communicate and who would scream and tantrum in frustration because she couldn’t make herself understood. With young inexperienced and impatient parents, she was up against too many obstacles and made her anger felt. Maddy screamed and tantrumed too; in utter despair at us and complete fury at the world. It was a long time before i realised that it was because she didn’t want to speak, to interact was unbearable and at the heart of it was because she had no concept that i needed telling. Maddy thought i already knew what was in her head and that i was being difficult trying to make her say it out loud. When she had no other verbal language at all, she had one sentence. “I. DON’T. WANT. ANYTHING!!!!!” howled in fury at us whenever we tried to get her to respond.
Neither of my elder children used language in a way that made it easy to communicate with them until they were 4 1/2 and even then it was a long process to get beyond the simple. Fran was not fit for school at 4 1/2, Maddy would have been lost without raft or pad. Maddy is still learning to communicate emotions now, whereas Fran still has some hissy sounds and is a naturally reserved person but can be eloquent when she chooses. At 6 Fran nailed B and P, a 6 Maddy was not quite so likely to fly into raging despair if she couldn’t make herself understood.
In stark contrast, Amelie and Josie were both speaking words to me at 1 year old and chatty and fluent at 2. Better parenting? maybe. Different minds? Oh yes.
Over the years we’ve ended up in a circle of friends who have children with variously speech issues. Some are worse, some are better, some have different underlying issues, some similar. I’m not sure why, but i tend to feel that i have nothing to offer any of these people, that my brush with Speech and Language issues have somehow been fake or invented, or that nothing i could say would be helpful. In the end, i can offer up a picture of a girl with the face of an angel and 2 well adjusted speaking children who have battled mild but very definite speech issues and come up smelling of roses.
I’m kind of sad to be waving goodbye to H, who was a good friend throughout all this, but delighted to be at the end of a process we entered on the day Fran was born. Finally when it comes to SALTs, i don’t want ANYTHING. 🙂