Down day :( DS developmental age

[shazian]

OK, so DS is 11.9 has been in hospital for 13 weeks now for reassessment. Been told yesterday he has developmental age of 6 months to 1 year :(. I am so sad, actually going about mopping floor tears tripping me, dont know why obviously i know my ds so well, i know what he cannot do, why am i so sad, just because ive now been told and its in writing i dont know!! I know with the correct input he may have some potential im trying to be positive, however being realistic too.... my gorgeous handsome special boy is gonna be a baby forever. Life can be cruel and shit at times :(

Hi Shazian, its OK to feel low & shit & sad.
But you know you will, pick yourself up & carry on getting the absolute best for your gorgeous boy. Of course he has potential, and you will help him fulfill that potential.
Do you think this assessment period will be helpful to you to get the best possible support and care for your son going forward.

Aww thanks mymate. Yes im sure DS assessment will now get him great support (i hope) because there are lots of reports being done which now show his many problems ie sensory related etc which had never been noticed before. So hopefully at school (whenever he gets back off 1 year now) he will get the correct input, also detailed is what he needs from SLT etc, so fingers crossed all goes well. He is being discharged this friday, so cannot wait to get him home been there from 20 august x

ahh I hope you all have a lovely weekend.
Sensory processing is the route of so many problems & anxiety.
It was only once i understood how much ds2 struggled with sensory processing that i realised what a frightened little boy he had been. Now us & school are aware & we are able to manage his environmnet and he has had helpwith sensory processing he is much more able to engage & therefore develop.
Remember to take care of yourself too.

Hi Shazian. Nothing to add really... But that I hope some positive action comes from this reassessment and that you get more help and support for your lovely boy. x

Thanks mymate, yes your right many of DS problems are sensory related due to his no communication it was difficult to get to route of problems. And thank you troutsprout trying to stay positive :) x

Nothing to add shazian but wanted to say , be kind to yourself and enjoy having him home

Hugs shazian x

However much you know what your childs issues are it is still like a stab in the heart when someone else confirms it.

Sensory issues play havoc for DS and his learning. He is fortunate that he is verbal but unless supported with it the only thing that comes out is anger and the urge to run.

With school making allowances for that it has helped tremendously and I am sure it will help your DS too and give him peace from sensory stress and help him learn new skills x

I remember your post about when he was laying hugging you x he is loved and he loves you, that is the most important number one part of life itself. :)

Glad to hear he is coming home on Friday!

Hi Shazian,

I also remember your lovely post about your ds kissing you, such a lovely moment :)

Huge hugs to you. Hope feel that high again very soon xx

Sending you lots of hugs and a shoulder to cry on shazian

It probably feels like it does when you get the diagnosis for the first time - having something in black and white is terrible as it seems so irreversible and absolute. But you know I am tempted to think saying a boy of 11yo is the equivalent to a 1yo is meaningless (and actually I'm a bit that you were told that). Whoever said this (paed?) doesn't know him. Doesn't know what he can do, what he is capable of, what he feels, thinks etc like you do. He's not like a baby or like a baby in a 11yo body - he's like an 11yo boy with a developmental disorder which results in differences between him and his (same-age) peers.

Most important he is still the same boy you have known and loved (and who loves you) for 11 years.

And you're damn right that with correct input he has potential. I know I bang on and on and on about ABA but I have recently heard of someone starting it with a non-verbal teenager with huge success so far. It's obvioulsy just one kind of therapy but if you can somehow find some meaningful support for him (eg at school) I bet he will amaze you. Look at saintlyjimjams her ds is a bit older than yours and non-verbal, but since he's had the LAMP aid (have you seen her blog?) he's amazed her with how much he can communicate.

Don't let them write him off.

Anyway in the meantime lots of hugs and we are all here x

More hugs from me. Bialy has put it so well.

Aww thank you everyone, i knew you'd all understand. Have been down on and off all day, daft really. Made myself worse cos went xmas shopping and of course for ds its all baby toys and he is almost 12 :(. I know your all right he is still my gorgeous boy and thank you for reminding me of his last home visit where he lay all over me kissing me constant, very new for him. So yeah, positive thinking from now he is still same boy whom i adore, loved so much by us all.... we are gonna reach for the stars, with the right input he will do more than anyone would ever give him credit for. Bialy yes have seen saintly's blog her ds sounds a lot like mine and he has done absolutely amazing, she must be so proud. ABA is something ive thought about, PipinJo has told me a lot about it and how it helped her DS, so hopefully sometime soon when ds gets home and hopefully back to school we can see what other help and support is available to him. Thank you all, feel bit better now xx

so so sorry. what an idiot i was, will get last post deleted. misread 6 months as 6 years. Had been aware your ds was struggling and got carried away thinking "you see, everyone who'd read your posts could see they'd all underestimated him, and look how much by"

Still think there are many, many dc (and probably your ds included) who almost every professional assumes are incapable of understanding or communicating, and then the barrier is shifted and the parents can say 'told you so'. Have worked with adults with PSMLD in various settings on and off over the last 20y, and many of the 'most impaired' clients very, very clearly had an extremely good grasp of what was going on around them.

Hi Shaz
So sorry you are feeling down.
You sound like you are a lovely mother to a gorgeous boy who is lucky to have you.
I wonder who told you this as it is not only insensitive but also a rather old fashioned way of looking at a person. He may be at a developmental that equates to this age but it is ultimately nonsensical because it is overlaid with the fact that as a nearly 12 year old, he has all the experiences that a 12 year old has had.

It doesn't really help you if it does not allow you to think how he can move forward.
At this age, you want to be thinking of what learning can practically help him to be as indpendent and fulfilled as possible. Dignity in life means being able to do as much as you can for yourself and to live a life which is full of purposeful activity-placves to go, things to do and people to see.

It emphatically does not mean a life lolling about, being bored because everynoe does everything for you. Most of the children who I work with who have profound needs, lead lives of dignity and joy with a realistic level independence and bring great joy and meaning to the lives of others.

For older children and young adults, Person Centred Sctive Siupport is a great and bvery practical application of ABA.

I hope you feel better soon.

He doesn't have to have baby toys (not unless he really wants them!)
What does he like?
What is your budget?
Can we help?

That kind of comment is very, very useful to put in your next-DLA-reapplication file. Not relevant to much else.

Imagine having a profoundly deaf teenager who signs fluently, is never off facebook/ twitter /msn /whatever teens do these days [old emoticon] and being told that her spoken language is at the 3 year old level, and her understanding of speech is below that of a 6m old.

Thank you zzzzz your right my gorgeous DS is so happy and loved by everyone :). maria hadnt thought of that re DLA and im actually in process of filling it out renewal due in February. You'd think there would be a box you could just tick to say no change, or situation worse... then again i know we all feel same about filling in this dreaded form. moondog thank you so much, i am defo going to look into what is available here for ABA (im in glasgow). To be honest i actually asked the question, only because DS been quite anxious, self harming, school refusing etc for last year. He has dx of GDD, Severe autism, low muscle tone, pica, SPD. He has no communication currently trying PECS on stage 1 he seems to be doing well. Basically he almsot 12 ive been aware of the severity of his problems from age 4 at this time was told GDD so my thinking was ok he is 4.6 and like a baby of 6mth to 12mth so was thinking by time got to 8/9yrs he may be similar to a 2/3 yr old if you get me. Anyway he been in ferndene specialist hospital for last 13 weeks for reassessment due to various problems, off school 1 year exactly. He been seen by doctors, psychologist, psychiatrist, OT, physio, SLT etc basically everyone working with him over last 12 weeks. I was told one assessment they would do would be BAILEYS (think thats what its called) to check developmental age on different levels, so we had discharge meeting on monday and went over everything, when was end they asked was i clear on everything and had i any questions, now obviously i know what ds can or cannot do, i never say never, never give up hope etc but just to see what the professionals thought i asked about the assessment and what developmental age they woudl give him they said 6 months to 12 months and 18 months for a few things, they are gonna give me full detailed report with their findings. I already knew in my mind he was 1yr to 18mths at most however it was still upsetting, silly i know. He is 11.9 no communication, cannot feed or dress himself, has some understanding but very limited, still in nappies (faecal smears even eating it), very solitary play but only plays with cause and effect toys that light up and talk/musical. For xmas i have got him lots sensory things he will like like floaty colourful scarves etc, huge bean bag, peanut ball but was trying to get specific vtech musical mirror learning toy he plays with all the time in hospital, would you believe only avail in pink, so this upset me cos is toy for baby bad enough im buying for almost 12yr old, but cannot bear to buy in pink if that makes sense. Back to being positive today, had learning support guy out re trying to get ds back to school so were working out plan. Just so looking forward to friday when get him home after 8 months daily mon to fri to yorkhill glasgow then 13 weeks hospital in newcastle with 3 hour drive each way, think whole thing just got on top of me. However im feeling much better today and trying to stay positive, never say never and whatever happens my ds will always be the same boy whom i am so lucky and blessed to have. Thank you everyone for your lovely comments have helped me a lot :) xx

Thank you zzzzz your right my gorgeous DS is so happy and loved by everyone :). maria hadnt thought of that re DLA and im actually in process of filling it out renewal due in February. You'd think there would be a box you could just tick to say no change, or situation worse... then again i know we all feel same about filling in this dreaded form. moondog thank you so much, i am defo going to look into what is available here for ABA (im in glasgow). To be honest i actually asked the question, only because DS been quite anxious, self harming, school refusing etc for last year. He has dx of GDD, Severe autism, low muscle tone, pica, SPD. He has no communication currently trying PECS on stage 1 he seems to be doing well. Basically he almost 12 ive been aware of the severity of his problems from age 4 at this time was told GDD so my thinking was ok he is 4.6 and like a baby of 6mth to 12mth so was thinking by time got to 8/9yrs he may be similar to a 2/3 yr old if you get me. Anyway he been in ferndene specialist hospital for last 13 weeks for reassessment due to various problems, off school 1 year exactly. He been seen by doctors, psychologist, psychiatrist, OT, physio, SLT etc basically everyone working with him over last 12 weeks. I was told one assessment they would do would be BAILEYS (think thats what its called) to check developmental age on different levels, so we had discharge meeting on monday and went over everything, when was end they asked was i clear on everything and had i any questions, now obviously i know what ds can or cannot do, i never say never, never give up hope etc but just to see what the professionals thought i asked about the assessment and what developmental age they woudl give him they said 6 months to 12 months and 18 months for a few things, they are gonna give me full detailed report with their findings. I already knew in my mind he was 1yr to 18mths at most however it was still upsetting, silly i know. He is 11.9 no communication, cannot feed or dress himself, has some understanding but very limited, still in nappies (faecal smears even eating it), very solitary play but only plays with cause and effect toys that light up and talk/musical. For xmas i have got him lots sensory things he will like like floaty colourful scarves etc, huge bean bag, peanut ball but was trying to get specific vtech musical mirror learning toy he plays with all the time in hospital, would you believe only avail in pink, so this upset me cos is toy for baby bad enough im buying for almost 12yr old, but cannot bear to buy in pink if that makes sense. Back to being positive today, had learning support guy out re trying to get ds back to school so were working out plan. Just so looking forward to friday when get him home after 8 months daily mon to fri to yorkhill glasgow then 13 weeks hospital in newcastle with 3 hour drive each way, think whole thing just got on top of me. However im feeling much better today and trying to stay positive, never say never and whatever happens my ds will always be the same boy whom i am so lucky and blessed to have. Thank you everyone for your lovely comments have helped me a lot :) xx

You really have been through the mill haven't you?

Your toys sound very imaginative.
Have you thought of an iPad for him?
There are so many apps now (many free) which work on cause and effect.
Someone linked to this interesting presentation the other day Info. on lots of cool apps

The company Therapy Box do some really great protective cases (I like the Big Grips one-it looks really cool) and are so incredibly helpful as well.

If funds allow, their new app Scene and Heard enables you to magic up pictures and film clips really easily so he can take his news and views back and froth from school to home and have fun sharing. It is brilliant and we are starting to trial it with kids with more complex needs.

Wnen most people hear about ABA, they think of full on table top style work but Personm Centred Sctive Support is very practical, although not too many people know about it-yet.
Person Centred Active Support

Priory Woods school also has a great website jampacked full of fun games for children at different levels of need.

Hi Moondog, thank you so much will look up the links youve suggested. I have ipad however ds has no interest whatsoever, just puts it in his mouth or drops it no concentration for anything really. in hospital the now they are trying to do school lessons/sessions the most he has managed is 15 minutes. he is doing things like posting buttons in big letterbox :(. He cannot play a games console, no interest in laptop or ipad, only 2 mins at most watching tv, cannot hold a pen or draw etc. He usually just walks up and down all day long floating a twiddly (anything he gets his hands on) and holding a musical toy to his ear :(. Im going to look up your links now. ABA is something im very interested in, just need to get him home be back at a good place then see what help i can get for him, thanks so much xx ps im sounding very negative about ds, im not really he's such a little darling and happy in himself which in return makes me happy :)

thanks so much moondog loving the priory woods school website, lots of things on there for ds, thanks again :)

Awww thanks zzzzz will look that up too, lol my xmas shopping will soon be over at this rate :)