Review meeting today

[dekra]

Finn had his initial assessment 7 months ago and today had his first review appointment. His language skills have come on slightly, in that he has a broader vocabulary and has more parroted sentences. He still can't put together his own sentences. His motor skills (both gross and fine) have not developed since his initial assessment. The team were more recepetive to autism now and although they still say that there are areas where he doesn't quite fit fully within an asd they feel he needs a formal ADOS assessment and are arranging this for hopefully next month or the following month at the latest. What they have said is that in years past he is exhibiting enough signs to have been given an asd dx but that nowadays they want to be sure before labelling a child for the rest of their life.

[Sally44]

Okay, good that he has made some progress.

 

Rote learnt phrases, are not spontaneous speech though, so although it is an improvement professionals have to be careful that they do not over estimate his speech and language abilities because he may learn to memorise rote phases and use them appropriately and appear much more advanced than he is in that area.

 

Google echolalia and delayed echolia and Semantic/Pragmatic Speech Disorder.

 

This is typical of an ASD and is a Speech Disorder, not a speech delay. You want the SALT to put that in writing because a speech disorder is for life. The benefit of having that detailed is that it would make him still eligible for SALT input at secondary school stage [regardless of what type of secondary placement he is at].

 

Also he has gross and fine motor skills. Is the OT involved. Has she carried out standardised assessments? Does she confirm he has Dyspraxia?

 

Gross and fine motor skills can be indicative of other difficulties. Movement requires the sensory system to be working correctly eg. balance [vestibular] and co-ordination [proprioceptive]. So if your vestibular and proprioceptive senses are not working as they should your visual, auditory, taste, touch and smell senses may also be affected to a greater or lesser degree - which would mean the child could have a Sensory Processing Disorder as well as Dyspraxia.

 

The child may have other motor planning difficulties such as writing.

 

The child may have executive function difficulties [look at www.schoolbehavior.com info on executive functions].

 

Dyspraxia is not just about planning movement. It is also about sequencing and planning thoughts and actions.

 

Having problems with sequencing [which can be in any of the senses], can be a component of a specific learning disorder such as Dyslexia. It may affect short term and working memory etc.

 

And, if I were you, I would push for a diagnosis. It is not about a child being labelled for life. It is about a child getting the support and provision it needs. And for your child to receive that, if he has difficulties in all these areas he is probably going to need a Statement of Special Educational Needs and a diagnosis would be crucial to getting a Statement.

 

A Statement is the ONLY legally binding SEN document. Without it any support or provision your child needs could be withdrawn at any time and you could do nothing about it, other than seek an assessment for a Statement to get that support included in it so that it WAS legally binding on the LA to reinstate and provide it.

 

If a child does not have an ASD, the diagnosis could be dropped in the future.

 

I think it is more likely he has a combination of difficulties/disorders, with ASD being one of them, along with Dyspraxia and possibly sensory processing disorder, and SpLD. That makes the combination complex, and his difficulties are severe. So he is exactly the type of child that SHOULD have a diagnosis and a Statement.

 

As Finn is now 4 when and where is he going to start school?

 

And although children with an ASD can also have global developmental delay, their ASD difficulties can mask areas of real ability that begin to show through as they grow up.

 

My son has been working at P scales and level 1C/B for years. Yet he is assessed as being around average cognitively. He cannot read or write independently yet [but is making alot of progress]. His Dyslexia Teacher has just been on the phone to me saying that she believes he is gifted in certain areas - and these are areas of ability that I have seen grow over the years, and which is something she wants to try to work on more to bring him on and to increase his self confidence.

Edited March 28, 2012 by Sally44

[dekra]

Hi Sally,

 

The motor skills is based purely on the fact that for gross motor skills he can't yet walk down stairs with alternating feet although he can walk up them. For his fine motor skills (which are good in many ways) he cannot make good marks on paper with a pencil and colouring with pens or crayons which require less pressure all he does is backwards and forwards sscribbles he doesn't even do circular scribbles. Dyspraxia and disgraphia are certainly things on my mind but I want the main dx first without pushing for dx of the rest until the main issue is resolved, then the rest of them can be looked at and pushed for. we do not yet have the OT involved although the edu psy was going to arrange for one to see Finn regarding his refusal to shower (our new house does not have a bath and we are hoping the OT will be able to force the council housing dept to put one back in), hopefully that will be sooner rather than later as it's a long way (60 miles) to my mum's house to bath!

 

For the echolalia I have a recent report from his language unit to say he is echolalic but yet when the Dr today was reading out what I thought was the same report he mentioned that that echolalic tendencies were improving. That's something I am going to ask about next week when I talk to today's speech therapist again.

 

I don't need to have dx for statement as I am in Scotland and although we don't as yet have a CSP (similar to a statement as it's legally binding) I am happy that things are progressing to provide for his needs at the moment and that if his needs are not being met then a CSP will be done (the Scottish Government have a Every Child Matters policy which clearly outlines procedure for this and I have the right to demand one at any time if I don't feel they are meeting his needs). On the other hand I do think the dx will be helpful to put on paperwork to make it smoother so yes I will be pushing for the dx. We went in today prepared to push so when they said they would be able to give a dx based on the ADOS in the next month or 2 then we were happy. My next worry is what if the ADOS does not show he has ASD? Do I fight against a diagnostic criteria that I'd be happy to endorse if it gave me the result I wanted? I think both myself and the Dr's are working on the assumption that it probably WILL confirm either ASD or at least strong ASD traits, if it doesn't we will cross that bridge when it comes to it. Again some of the doubts to ASD were his affectionate nature and his desire to communicate - this might be a hang up the professionals in our area seem to have but I am sure the ADOS will address.

 

Finn is due to start school in Aug just 2 weeks after he turns 5 and it is still pretty much agreed that delaying him a year would likely not produce much benefit, so I am more relaxed in my decision that this was the right thing to push for. Even the SALT's that are dismissive of ASD have confirmed speech disorder rather than delay so I also have little worries about the availability of long term support.

 

It is good to hear your son is not only coping with his new schooling but seems to be thriving from what you are saying - makes the fight you had to get the services he needed worthwile. Finn does have strengths in ICT/Tech and also numeracy and the MDT have acknowledged this both as a talent but also as proof of restricted interests. My personal view is to play to these strengths, he may take longer (if ever?) write properly by hand but already he is able to type his own name (first name and surname) so I know if need be he can be taught to read and write via computer.

 

So lots to think about today (and more reading to do on ADOS and about executive function as you mentioned) but I do feel very positive and feel there should be a dx soon.

[Special_talent123]

my gross and motor skills are to do with dyspraxia wonder if that needs looking into as well

[Sally44]

Okay, sounds like things are moving in the right direction.

 

I would push for an OT assessment because if he has problems with showering/bathing/hair brushing/nails cutting etc, that could be other sensory issues.

 

There are quite a few kids on the spectrum that cannot stand the sensation of a shower spray on their skin, and some have problems with the smells of things, the acoustics, and the expectation that their hair is going to be washed and their nails cut.

 

So I'd get an OT assessment BEFORE a shower is put in - unless you need the shower for everyone.

[dekra]

It's getting the walk-in shower cubicle removed and a bath put in that we need (Finn can't stand being washed, the best way to get him clean is just to put in bath and let him get on with enjoying it) and we keep his hair as short as possible to limit the distress of hair washing. We need the bath to go in for Finn, for the rest of us - myself I prefer a shower so would like the shower kept but I am flexible, hubby likes both and the baby hates both so it really is all about Finn. With the nice weather coming in it is also getting more urgent as warm weather and outdoor play means mucky kids!

[dekra]

I also forgot another gross motor skill he doesn't have is the ability to hop on one foot.

Edited March 28, 2012 by dekra

[Special_talent123]

i cant hop on one spot, ride a bike, hold a kettle

[Sally44]

If Finn has these other sensory issues, then I would really push for an OT assessment. Ask the paediatrician to refer you. Google sensory processing disorder, and write down all the examples that Finn does.

 

A referal to OT usually takes up to 2 years, so get his name down.

 

Although the NHS OT may not be able to provide certain therapies, if they are involved and have assessed Finn and diagnosed him, and you get in writing that they cannot provide the 1:1 therapy for either dyspraxia or Sensory Processing Disorder, then you maybe able to get a school placement where they have an OT on site who is qualified. So it is worth getting on the waiting list.

 

His overall sensory functioning may mean he easily gets overloaded and overwhelmed, and evidence of sensory problems may also be needed for you to be asking for a small class size [typically up to 8 pupils].

 

My own son could not cope in a mainstream class size, even the smaller one he was in [20+ children] was too many. He could not learn because he could not concentrate or home in on what the teacher was saying because he cannot screen out other background noise. He simply had to turn off and screen out everything.

 

There is alot that an OT can do to help with development. Movement and motor planning causes brain development. That is why parents are often asked "did your baby crawl?". And we have seen a big improvement in our son now that he is having regular 1:1 OT sessions a number of times every week at his school.

[Sally44]

I also wanted to add that IF they are already recognising that he has a speech disorder, and dyspraxia, and also a sensory processing disorder - then, unless he has no social communication/interaction difficulties, he is fitting the criteria for an ASD. Although sensory issues are not part of the criteria, it is recognised that most, if not all, people diagnosed with an ASD have sensory issues.