Are you there PHOENIX?

[misscutandstick]

After a couple of weeks of letting the dust settle with the MRI results, I tentatively did a google with what i was told...

DS5 has 'scarring' on his cerebella, There was some degeneration due to lack of oxygen before birth. The occipital lobe also has some damage/scarring.

The cerebella is kinda the 'boot up system' AFAIK, and does most of the work as a baby. It 'fine tunes' motor movements by feedback from not only balance, but moreso by muscle feedback (you can feel when muscles are tense/how heavy something is by how much muscle power is needed to move something, or when pressure changes by shifting your weight from foot to foot for example) and then responding to it. Because of the damage DS5 has little feedback, which results in his lopsided gait/ wide straddled gait, stomping walk, finemotor problems (lack of pincergrip), AND ... lack of SPEECH!

Speech, as is obvious, needs copious amounts of fine-tuning, which the cerebellum is responsible for. DAmage to, malformation of, incompleteness, or deneration of the cerebellum causes varying degrees of ataxia. A damaged cerebellum would also be a cause for messy eating, hypotonia (strangely), mental retardation and you guessed it, developmental delay. The cause of the damage would affect wether or not the problems are degenerative. In DS5's case its unlikely as the damage has already been done and finished. But if the damage is disease based then likely it could worsen.

Im certain that the damage to DS5's cerebellum is responsible for: his delayed development, clumsiness/falling over, lack of fine motor control, and total lack of speech.

I havent been able to find any information on growing/maturing with this problem as yet.

I was wondering if you had a date for MRI yet?

[Phoenix4725]

No not yet we been kicked up to Gosh ,so got to go through everything again also waiting see cleft team .

wow described our ds to a teehe ticks every box plus the hypermoblity now I am curiours

how Is your ds doing with noises is he making any yet>

[misscutandstick]

He can make a hard "Guh" sound, so when he makes noise he sounds like a stereotypical baby. Which im dreading when he goes to school - hes tiny, doesnt talk, makes baby noises, and is still in nappies... what else are they going to think except to believe hes still a baby?

Me and DH have both discussed the local special school which apparently has an excellent reputation and facilities. DS5 will be starting in MS, but we are going to look into the SN one. We said that we would see how he is at 3yrs some time back when we first found out that all was not as it should be and that there was a possibility of needing SN schooling. Hes now 3.3y and still at a 12/16mth level, and doesnt seem to be making that much progress (no speech, no self care, very little awareness/understanding), although he can do occasional simple planning (bringing a chair to reach something), but its all pretty basic.

The reason we are thinking about SN schooling is because DS5 CAN learn, but he needs intensive imput for it, something an average teacher with another 30 kids cant do. He doesnt "just pick things up", or watch and copy.

He can sign around 80 signs, its seems to have stayed there for a while, i think, because he doesnt have any need for other signs. Vast majority are just nouns, but I think its comparable to the sort of language he would use if he could speak. For instance i dont honestly think he would be describing things, using big or little, or colours (red car, big dog, etc)even if he could speak. he does put signs together to tell a sequence, but its not usually in the correct sequence (broken, fell-over, car) but its quite understandable. He can also use "where?" appropriately - again i think its developement appropriate for a 12/16mth old.

If you are wondering, no, we havent got any further with statementing . Launching new attack in september. Going to chat to SN school about that and see if they have any advice to offer/help to give.

Hes still a happy, cuddly little chap and a bundle of fun tho!

PS am i right in thinking that your DS is in SN school?

[Phoenix4725]

Was aimi8ng for sn school for ds but the head felt that ds did not belong there did not know quite where to puthim he had mentioned the asd base within the school but was agred by all including myself this was not right

S&L unit turned him down for being to severe and having GDD

So we are going to give ms try with f/t 1-1 but I still havemy doubts ,Ds slips through the ne tnoneknows quite what to do with him.If ms does not work am going to have to conside rmoving.

Ah see last few months ds has started using big/little and using colours as in blue car signs

Ds is just out of nappies as he starts school thi year but he is very small and omes across as the 2 , 2.6 y he really is most ways add in piedro boots afos, no speech Im worrying to he was ok at nursery the girls adored him but school they all going to grow up fast and ds going to be eleft behind

[misscutandstick]

We went to see our local SN school yesterday - its lovely, got fantastic resources and really small class sizes (age.4).

However it was stated clearly that this school is designed for children with severe learning difficulties NOT development delays. I did point out that at only 3.3y, with a 2y delay it was extremely difficult to tell if it is just a delay (unlikely as 'just delay' just doesnt happen, theres usually a reason for it, causing other problems) or if he has learning difficulties. SHe pointed out that his signing is brill (we've been signing 2 yrs now), I agree it is, but his understanding is lacking severely. He looks a bright alert little boy, and he is in many ways - but i dont think we will know where his understanding/ability/mental capacity lays until hes 5 or 6, because of his delays.

So...

DS5 too is too bright for SN, too young for language unit, and cant keep up in MS nursery. We are definately sailing the same ship.

Talking of nursery - they are being fab! they really are bending over backwards to accomodate him, they have re-jigged little rooms for numeracy/literacy, they are learning makaton and his signing AND teaching the other children. They really are doing their best to fit around him, but i feel that it wont make much difference on the whole. But time will tell.

[misscutandstick]

Just want to clarify - the emphasis at the SN school was very much to stimulate senses rather than educate.

[Phoenix4725]

yes there is adefinte where do we put them when they dont tick right boxes.

Update Ds is at ms and it is going ok , ther enot up to speed on signing yet so have been going into help.But he has settled so well i been heloing with the other kids.

His Lsa is new to it all but she is very willing and wants to learn so half battle the teacher is being very good about including him to but also stepping back when hes interacting.

Even better salt came in and recommend some stuff to be brought makton books ,programs etc and the head has gone and brought them today .

[misscutandstick]

well it sounds as positive as it could be