NEW MEMBER SEEKING HELP FOR LIGHT OF MY LIFE-MY 6YR OLD SON

[ufcfytah]

Hello everyone, i joined a couple days ago and want to gain as much info about my sons specific asd needs especially where he 'sits' on this spectrum-hes 6yrs old and a big lad for his age and a gentle giant very passive not verbal but communicates mainly by holding my hand and leading me to whatever he wants...i have a faily big family (soon to get bigger!) of 3 other children at present who all love A to bits...the main area of help to me would be re: his eating and toileting he only eats buttered toast, used to have weetabix with milk in a morning but now as hes getting older he seems to be eating even less! he drinks just sprite or 7up and it has to be fresh fizzy (i think he likes the sensation of bubbles?) he has only just started at a special school this week but it has been tears all the way(his and mine!) it frustrates me so...mainly becos hes not verbalising and yesterday came home with a ###### nose ..and various changed stories of how it happened-hit by a ball,fell over etc...is that the care they provide in school!..if only he could tell me what type of day hes had etc....it would be such a relief.....i feel helpless and alone and i'm sure i'm neglecting wife and othr kids-WHAT TO DO THOUGH.......

[Nic m]

Hi and welcome to the forum.

I dont know that i can tell you much but i can tell you my daughter has difficulties with eating and also with going to the toilet and this has varied throughout the years but has never gone.

Certain textures she cannot tolerate, she has favourite food for a while then can go off them immediately.

She has always struggled with going to the toilet and now requires medication permanently.

Like every child, you will know it is trial and error and plenty of perseverance.

I dont have other children so i dont know how that feels can only imagine how torn you must feel.

good luck and i am sure someone else will come along soon to point you in the right direction.

nic

[pearl]

Just to say hi & welcome, ufc.

[Stressedout]

Hi uf

 

I too have a big 6 year old boy. He is high functioning though. On the eating front his diet is so limited that we now have a nutritional drink supplied on prescription. Please PM me if you want to know more about that.

[ellisisamazing]

Hi ufc,

 

Welcome! <'>

 

My son is also on the prescribed nutritional drink, his iron level is so low, he may need a transfusion if it doesn't raise by next months blood check.......

 

My little man also doesn't speak, totally non verbal, though sometimes some of the noises he makes sound as though he is really trying to, he also uses gesture and guides us to his 'target'!!!

 

Don't beat yourself up, you're not a superhero! I am sure your family really appreciate all your efforts!

 

Lisa x

[Suze]

Hi welcome <'> .............could his school not provide a dictaphone ???..........my sons unit send one home every evening detailing probs he,s had, issues etc and I speak into it in the morning to let them know what sort of a night he,s had and how he is that morning.It helps me and them alot if were having issues with certain things and is quicker to use than a home school diary as you can just speak into it quickly.Take care suzex

[ufcfytah]

Hey everyone! THANKYOU for that warm welcome, its nice to be able to 'talk' about this.....suze,dictaphone-great idea, unfortunately up here in the grim north i think theyve just grasped the diary scenario! however, writing in there as much as i can... hi lisa-i can really relate to the part you say that he is trying to talk i also have seen this from my boy and feel angry and upset when he does this giv out lots of cuddles hugs and tell him 'its ok '..frustrating though..... stressed-i've not heard anything about a nutritional drink as such..will enquire though, thanks pearl and nic m also

[Bagpuss]

Hello and welcome to the forum.

 

We've had similar experiences with limited diet and wondering what has taken place at school (dd came home with a black eye once, and couldn't tell us why).......it has improved over time though <'>

[Clare63]

Hi UF and welcome to the forum, you certainly have come to the right place for lots of ideas and support.

Sorry I don't personal have any advice on the situation presented above, except that I think I would be demanding from the school what exactly happened to my son whilst he was in their care.

Look forward to getting to know you better. Sounds like your doing a grand job.

 

<'> <'> <'>

 

Clare x x x

[ellisisamazing]

Just wanted to say that we have a diary that we send back forth between home and school each night and El's fabulous teacher also sends the classes computer memory stick home for us to view and copy his activities and antics at home! We have also had hundreds of brilliant photo's from his time in school that are also on the memory stick.....so many lovely photos that we'd need get a chance to take!

 

ufc, give yourselves all some time to adjust....it's a big change, but you will all settle into your new chapter!

 

Lisa x <'>

[Karen A]

Hi ufc Wellcome to the Forum. <'> <'> Karen.

[forbsay]

Hello

 

Welcome to the forum.

 

forbsay

[elun1]

<'> Hi and welcome

Sounds like you're doing an excellent job. Our boy is 6 too and diagnosed with severe autism and severe learning difficulties. He has epilepsy too. His communication has improved and he can name objects he really wants etc. We used to use PECS and that really helped. He refuses to use his PECS book now though! He also uses some sign language. I went on a signalong course and that was useful too

Elun x

[Kinda]

ufcfytah

 

Have you tried communicating with him by way of drawings which may help.

 

As for the food we were never able to alter our son's limited diet and in the end we just accepted it in some ways but kept trying him with different foods with no success.

 

Now he's 24 years old and is managing to eat a wide variety of food and has finally "got there".