Need to talk....

[proudestmummyever]

Hey everyone, most of you will knw by now my story with my youngest Dc Jack, aged 3 in 2 weeks!!

Jack has a very rare genetic disorder, it has no name, and no one in Britain apart from Jack has been found.

He suffers severe intractable epilepsy, daily seizures and spasms, has hypotonia, hypermobility, damage in his left and right temporal lobes in the brain so he can't walk, talk or even sit up
We went to a special school for kids with neuro disorders for an assessment to see if Jack could get in, so we met with the neuro from Yorkhill Kids Hospital at the school and he assessed Jack, said he has no communication, no co-ordination and very little understanding and that the school would not be of benefit to Jack. He also asked if Jack could do things before, I said yes, he used to slowly cral, graso toys, and sit up on hs own, but I truly think he has lost this because of all the meds he has bn started on and taken off, but the neuro thinks it is regression because he has so many seizures, I seriously hope ths is not the case, I am gutted, soo devastated, I understand what the dr says, but I know Jack has a spark in him, and I know what Jack needs by facial expressions and sounds, so tht is communication, and Jack will open hs mouth as soon as he sees his cup etc, or smiles as soon as he see's me or daddy,his sister or gran, papa etc, he knws who we are, In the Night Garden on Cbeebies, he ADORES that programme, laughs etc, and if Jack is with my mum or sister, say waiting in the car for me while I have briefly gotten out nd my sister says "Where's Mummy" He will look around for me and get excited...so he does have understanding, and has came on great with physio, I dunno hw ths dr can say all ths after 15-20 mins of seeing my ds in a room

because doctors are sometimes not wiling to see positives. YOU know him, see him daily and if you say he comunicates, then he does, sod the doctor, trust me they can be wrong

hope your ok, please dont let this doctor stop you seeing the good in your son, he sounds fab.

hope your ok

Aw Lisa thanku soo much, tht was lovely, he is a gorgeous, happy wee boy, and I feel like yeah the dr is right to a degree, but he made out tht ths is hw Jack will be from here on in and EVERYTHING was negative, and I do KNOW him better than anyone, he never leaves my side, I am absolutely devastated, and left the school in tears, couldn't catch my breath, thank goodness my dad was with me tho

I think i know what school you are talking about, was it in Cumbernauld?

Ds went there from when he was 18 months up till he was 5 but the Directorship of the place changed a few years ago and they have dramatically adapted the admission criteria, if ds was re-assessed under the new criteria then he would never have got in!

In hindsight this could have been the right decision as he is so severley disabled that the treatment on offer there wasnt as much benefit to him as it was to others.
They are quite partial to the miracle stories in the Daily Record if you know what i mean?

Most kids they accept now are at least crawling whereas when ds started pretty much none of them were, which is a shame as it limits the options for kids like ds.

Glittery, yes yes yes!!! A don't care a'll tell the name of the school The Craig Halbert Centre, I think it will be ths school yeah, I am gutted, is yr ds mobile glittery? Are u from Sotland too? xx

Hi, i really felt for you when i read this.
My daughter has extensive global brain damage due to a very rare condition and is on anti seizure medicine.

She is 12 years old (despite me being told she wouldn't make 6 weeks old ).
Then i was told if she survived it would be (using the doctors words here) 'in a vegetative state' !
I could alreday see though,even as a tiny baby that this would not be the case, i felt she was very alert....although none of the doctors could see this,or any other proffessionals involved at that time. I almost felt that i must just be fooling myself at one point but really i knew i wasn't.

Still 12 years on though when we're seen for assesments i'm told her communication is extremely poor (she's difficult to understand unless you spend every day with her due to affected muscle tone around her mouth ) and has very low intelligence etc. A few years ago a speech therapist told me she thought my daughter had the understanding of an 18 month old !!!
Well i don't know many 18 month olds that can understand sarcasm and use it appropriately, along with lots of other factors she was way past that developmental age.
So i basically thought 'stuff you ' and discharged her from speech therapy.

As for the local special school/ opportunity group,well they totally underestimated my daughter too. They wanted to play whale music to her all day and to shake rain makers (i am not knocking it for the children who do need sensory aids etc).
As a result though i don't send her to a special school and i home educate my daughter, she is a whizz on the p.c these days,even changing her screen savers herself,she can count,is learning to read and lots more.
I hung on to the belief that i knew my daughter better than any neurologist or doctor ever could (even the very nice ones) and i am so glad i did.
She can't walk or stand, but we've worked with what she can do. She had no verbal communication until she was almost 5...now we can't stop her talking.

Your little boy sounds gorgeous,and the fact that he smiles and loves you and his family, and he laughs and enjoys life must mean so much. I'd hang on to the good stuff that you know about him to get you through having to listen to anyone elses opinions of him.
He has a brilliant Mum to by the sound of it as you can see the spark in him, he's very lucky in that respect
Take care, Jo.

Aww Jo, tht post had me nearly in tears, it's like u wanna get so angry with the dr's as they don't live with us and see Jack day to day, what an excellent uplifting story, and yr wee girl sounds fab, a wee darling, itz not fair the way they sort of judge our kids, if they do an assessent I think they should do it in the kids's home environment over a few days

Bloody whale music! I dunno if Jack would like ths or benefit from ths, maybe he would....Jack can't walk or stand either, but he does weight bear on his legs now, which he couldn't do before at ALL.

He can't talk but I hope to god he will one day, u also sound like a fabby mum Jo, XXXXXX

Thankyou .
It's been a long and very hard road in places (and lots more difficult times ahead i'm sure) but i wish i knew then when my daughter was little what i do now when she's almost a teenager.

I guess the proffessionals didn't want to raise my hopes because her neurological picture/mri scans looked so bad. They still do look bad ofcourse but shes lucky i guess that in other parts of her brain have, in time, come to compensate for all the damaged parts.

I totally know how you feel about the assesment process though,it's so frustrating. There's a dent in one of my walls from the years i've spent bagging my head of it lol, oh and a hole in my tongue from the years i've spent having to bite it when dealing with certain proffessionals.

I really hope that you'll get to hear you little boy talk one day but still his smile must mean the world anyway (just saw your pics btw,you have a lovely family ) xxx

proudestmummyever yes it was craighalbert, i am in north lanarkshire.
ds cant sit or crawl or hold his head up even and his hand function is pretty hit & miss
when he started there he was so young it was impossible to tell whether he would progress or not as many kids similar to him at the time are now walking so i guess you never know.
they have tightened up the criteria in recent years and pretty much all the kids going into the parent and child group now already have a certain degree of mobilty, can sit at a plinth holding onto a bar etc.

the doctor you saw is a very lovely man who has helped us loads over the years but unfortunately knows the schools new criteria and has to stick to that.

What council are you under, have you looked at any other SN nurseries?

ironically given the new selection criteria, me & ds are on the poster advertising the centre that was sent to every doctors surgery in scotland!