Re: , and facilitated communication

[Guest guest]

Hi , I wanted to add to the discussion about academics because of our experience with our son, Matteo, who is now 21.Matteo is non-verbal, although he did speak a little when he was younger - short simple sentences relating to his needs. We know he chooses not even to say these things anymore because he is

difficult to understand and has become demotivated. Matteo is dyspraxic, so apart from the speech problems, he also has difficulty with fine motor skills and cannot use a pencil.The big problem with a child with similar problems - and I believe many of our children suffer from these problems to a greater or lesser extent - is that they are judged on what they can produce, so if they cannot produce they will be considered as having severe cognitive problems. But how can you judge intelligence in a child who cannot respond using the standard tools of assessment?Because of the autistic traits, Matteo's concentration didn't seem good, he often seemed totally switched off in his own world and he avoided eye contact - but I

could see intelligence in his eyes when he was 'connected' - and I have heard so many parents say that their children understand far more than they can produce.Our good luck, when Matteo was 12, was to meet a

classroom assistant who used Facilitated Communication (a controversial method, which has come in for a lot of criticism, but which is being used a lot in Italy with autistic children). The assistant provides physical support, which is reduced over time, to help the child write, thereby overcoming the problem of the dyspraxia. I don't want to describe the method here, as I've done so in the past, if you look at older posts, but what we found was that Matteo could cope with the classwork in his mainstream class (inclusion is the norm in Italy), and that there was an intelligence locked inside that no-one could have imagined. He had seemed absent to us, but in the meantime was fully aware of

what was going on around him and had soaked up information like a sponge.For years I thought we were the only ones with a child with DS using this method with similar results, but the Italian DSA organised a conference on communication last weekend, with a number of speakers talking about AAC, Feuerstein and a range of other aspects. A group of parents in the north of Italy under the supervision of a neuropsychiatrist has been using FC for many years. They showed videos of the kids over the years, and written conversations and what struck me most was that the individuals with DS express themselves with the same idiosyncratic style as Matteo and relate their communication problems in almost identical terms. For me it was fantastic to finally meet families experiencing what we have experienced as I have at times

felt very isolated. There was great interest from a number of parents, who had spoken about the gap between what their children could express and what they felt was their real comprehension after a previous paper. What the neuropsychiatrist stressed was that they were finding these abilities in DS+ ( he mentioned plus autism and plus West Syndrome), and where there is also significant dyspraxia.Communication is a priority, and if the child can sign or point to visuals to express their needs then they are in control to some extent. But if you see intelligence in your child's eyes (even if it seems to switch on only some of the time) then there is intelligence. I don't want to sell Facilitated Communication to anyone, but just to say it might be helpful in some cases and to say never ever

to underestimate that intelligence. Could it be that Penny isn't interested because what she is being offered isn't interesting?Matteo was lucky to have an older brother and to get the same bedtime stories as I would have probably read more simple stories to him if he'd been an only child. I remember him seeming pleased when I started reading Harry Potter, but in my ignorance I thought he liked the snuggling up to hear the story, not that he was following it all. This discovery didn't only revolutionize his life, although his problems with life skills are the same, but it also changed our lives as we now take it for granted that he understands everything and communicate with him as the adult that he now

is.I found the following article about dyspraxia and Down Syndrome very clear:http://www.downsyndromecentre.ie/advisorypanel/2009/mar/16/dyspraxia-and-down-syndrome/In the meantime, a Happy Easter to everyone here.All the best, - mum to Matteo, 21 Da: dparksion A: Inviato: Giovedì 5 Aprile 2012 3:22 Oggetto: Re:

I probably needed to hear about the academics. We just had part one of Penny's annual IEP. Her current levels are pretty poor. She is almost impossible to motivate. She is not interested in much and will not demonstrate what she knows so she comes across as grossly impaired. She will be transitioning to kindergarten in the Fall which is still a big mystery because the district doesn't have the SDC situation sorted out yet. If you have any suggestions, I'm listening.

>

> Hi, Everyone.......welcome to the group. I *Ditto* everything that

> Shane said. I have always stressed, especially for school, that Autism be

> the primary dx, not DS. It is the autism that will cause the most *issues*

> throughout their life/schooling. In Kindergarten, Gareth couldn't stand

> the lunch room, so the teacher let him eat in the classroom....a BIG no, no

> back then. Fire drills were another major problem....again, they would

> accommodate him by having his aide take him outside before the alarms went off.

> In middle school (6-8 grade) he couldn't stand the banging of the lockers

> and the high screech tween voices. Throw in other sensory/behavioral

> issues and you don't see the DS.....just the autism. Whatever you do, please

> don't ever give up on the academics....reading, math, etc. There's so much

> locked inside our kids heads.

>

> Take care, Everyone.

> Margaret

> Mom to Gareth, 23 y/o, DS/ASD/OCD

>