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Sad today :(

26 replies

coff33pot · 23/02/2012 21:48

Just got the pack from Maudsley with upteen forms to fill in re DS.

Connors form shows he is totally off the scale for ADHD although I know that it is all his sensory processing issues that are causing these symptoms.

Social communication form next :( yep totally off the scale for that too.

Then strengths and weaknesses form which DH and I did separately. Even made him go into another room to do his just out of curiosity and we both looked down after finishing as there are no strenghts according to this list and ticking that horrible box that tells them it causes difficulties at home twists my gut. It does seeing as I seem to be the only one that understands him and thats only because my head is as screwed up as his I am just not aggressive with it.

On the connors form there was a question he/she is an angel. To the outside world no he isnt but to me he is. Like now we have sat on our own playing lego harry Potter having a great time working out the puzzles and he put his head on my shoulder and said that was lovely mum I love you. I want to smile but its making me cry. He is happy talking on his mobile phone to all his imaginary friends but thats not good is it :( He cant cope with us all around at once and so it is hard work keeping him within the family niche when its all of us. Many a time I have thought to just go off with him. They are all NT and DH I love with all my heart as I do my other children and he works and trys so hard but its torturing me seeing the strain on his face and my other children and its torturing me that outside of family my boy is my angel and I want my boy back all the time :(

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JaneMare · 23/02/2012 22:01

{{{{hugs}}}}

CuriousMama · 23/02/2012 22:08

Sorry to hear this. I don't know what this form is?

Will you get more help now?

creatovator · 23/02/2012 22:12

Wish I could wave a magic wand and make everything better for you.

Sending more hugs.

coff33pot · 23/02/2012 22:36

Sorry for posting this miserable post. Its selfish when so many others are feeling just as frustrated.

This is for second opinion he is classed as 'complex' which I desperately need defined to actually get any help (or fight for it) he is being assessed for AS/ASD, tourettes and other issues.

I am just feeling down as I have filled in so many forms and written and talked of my DS failings for so long I guess this next lot have finished me today. That I am scared that these people will come up with some other hairbrained scheme.

It would be so nice to talk of nice things like I do with my other children and simple things like they fall down and put a plaster on it and its over with iyswim.

I have so many things I love him for, he makes me laugh with his funny musings and querks, his curiousness and forthrightness, his beautiful blue eyes, his long winded chat. But at the moment when he does this I am crying inside instead of appreciating him for who he is and at the same time this is tearing me apart. I also feel I am putting him down on these forms and I hate every bit of it even if it is hopefully going to bring an end to all this. Or even a beginning.

I know whats wrong but at the same time I dont know because no one will actually spell it all out. I need a dx so I can grieve. I had him and he seems to be disapearing the older he gets but when on his own he is back again. His tics are getting worse because I am helping with one thing but not another. He actually stayed 30 mins longer at school one day this week and I was so proud of him but in the evening and the next day he was so tearful and upset because of the simplest thing like he was poorly it was so awful and yet he did so well at the same time.

God what a brain bashing mess :(

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CuriousMama · 23/02/2012 22:44

Please don't apologise, we're here for each other. If you can't put it down here where can you?

He does sound so lovely. I know how you must worry though, especially for his future. It's heart wrenching.

Do you know how long it takes for dx?

CuriousMama · 23/02/2012 22:55

Am off to bed now, sending you a big squeezy {{{{{hug}}}} Keep us updated.

coff33pot · 23/02/2012 22:56

Thank you for the hug :) Have a good nites sleep x

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moosemama · 23/02/2012 23:23

Oh Coff33 ((hugs))

As CuriousMama said, there's no need to apologise, we all need to come here and let it out sometimes.

Its awful that in order to access the help and support our dcs need we have to constantly focus on the negatives, when there are so many pluses and positives to our beautiful children that very often others see right through - they only see the difference, not the beauty.

Whenever I read your posts, I am always struck by what an amazing, strong and loving mother you are and what an incredible relationship you have with your ds. I strongly believe that we have the children we do for a reason and regardless of anything else, your ds is your boy, loved unconditionally and simultaneously held aloft yet wrapped up safe by an incredible mother.

The problem is not with your ds, or with you its with the rest of this bloody world that refuses to accept differences and see them as strengths. We all have to spend half our lives carefully shaping ourselves to fit the standard mould, when in a world this huge there should be space for every single individual to be exactly who they are, without fear or judgement.

There's probably not a mother on this forum that doesn't worry for their child's future, but one thing I have learned of the past couple of years is that you have to take each bite as life throws it at you. Worrying about the past or the future just saps your energy for dealing with the now.

I could never have believed that my ds could have come on as much as he has in the past 6 months. I could have written your post a year or so ago - in fact I probably did write a few that were very similar, but, we have had parents' evening tonight and its obvious that with the right support in place, things can go well for ds1 and he can succeed and be happy.

The same will be true for your ds. All the questionnaires and negativity of the current process are just a means to an end, althought I know that each an every one makes you feel like you are somehow betraying them. Eventually though they will lead to the answers that will help you and others to identify and secure exactly whatevery it is that your ds needs to thrive and be happy. Please believe that - try and focus on a bright horizon if you can, because it is possible and we all have to believe that.

I wish I could do something to help, but instead will send you more ((hugs)) and hope that things move swiftly with the Maudsley and you soon have the answers you need for you all to move postively forwards.

coff33pot · 24/02/2012 00:35

Thank you for your hugs moose xx Your post made me cry and my little dog is giving me the most wierdest wrinked up face you could imagine right now and has plopped a disgusting soggy half dog biscuit in my lap ewww

I dont like moping on here I would much rather cheer someone up. I cant talk to DH about it anymore for a bit as its unfair. Well I CAN but wont. He works so hard and has had me to deal with for the last 15 years poor man! He is a rock and not of the emotional kind but I can gradually see him crumbling with tiredness as his eczema is now covering his body. He loves DS to bits and its horrible to see the frustration in his eyes when he cant control him and I think making him fill out his form has hit home as its always been me doing the paperwork. He comes to meetings and fully supports and adds to them, but its the first time he had to actually write negative stuff about his son and I can see it has hurt.

Its such a mixed roller coaster isnt it? I just wish I could take all this hurt away from everyone

I think its a day of worrying about everyone and everything and its on top of me as I have burnt my candle at both ends as the saying goes :)I will kick myself out of it and go on a long stomp in the woods or something tomorrow.

I have four weeks till the first assessment and two more after for the final be all and end all where we discuss it all so bear with me as I will probably have another scatty moment between now and then!

That is really great positive news about your DS and I am so glad for him he deserves the support as he trys so hard bless him. Give yourself a big pat on the back too as he wouldnt have got this far without you I am sure xx

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outofbodyexperience · 24/02/2012 00:43

Coff, it sounds like we went through a similar diagnostic process before Christmas. Filling in all the paperwork was hard, but the actual assessments were ok for ds. It was 1-1 and the psychs really know their stuff and are used to working with tricksy kids.
You need support too. Don't ever feel guilty about that.

Be kind to yourself x

TheLightPassenger · 24/02/2012 07:58

I'm sorry you are so sad. I agree with Moose and OutofBody, that unfortunately a big element of dealing with the correct diagnostic procedure (rather than being fobbed off) is an intense interest in all the things that a child can't do, has difficulties with, rather than focussing on positives. It is, understandably, depressing, but a necessary evil in moving towards correct, focussed, diagnosis and help.

coff33pot · 24/02/2012 18:18

Thanks guys. Well avoided anything to do with it today. I have to go through all the reports I have over the last year and photocopy them to send off but I have given it a miss and chilled out (with the drone of the washing machine!)

Collected DS from school and have spent the afternoon baking with him and eating the spoils! Grin

You are right it all has to be done but it is so sad to see at the end of most of the forms is "tell us your childs strengths".....and its such a small bloody gap :(

Looking back over yesterday I think there is also an element of fear of actually getting close to finding out and the finality of it. The wanting to know the needing to know then then not wanting any of this for our son. I am not unique and merely spelling out what a lot of mothers on here have gone/going through. But I really thank you all for lending me your ears last night xxx

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EllenJaneisnotmyname · 24/02/2012 19:22

Oh, coff33, I've just seen your post. Sad I'm really sorry you are feeling so awful. Any of these forms, like DLA etc, that make you focus on the negative are so blooming depressing. Trouble is, listing his strengths, while good for the soul, isn't normally 'useful.' From your posts, he's funny, affectionate and exasperating! He's unique and truly loved by you and your family.

You are usually one of the people on here cheering up and supporting everyone else when they are down. I hope we can do the same for you. ((((hugs))))

WilsonFrickett · 24/02/2012 19:27

Coff the next time you apologise for ranting, being sad or generally venting I will come down there and tickle you till you wee. You are such a generous person with your advice, it is never selfish to tell us how you really feel.

And we all know that feeling when you can't tick any strengths, or you feel you're reducing DC to a list of negatives so why wouldn't you share it?

I'm not even going to stroke your hair mind, I am actually going to tickle you till lady wee comes out so think on...

EllenJaneisnotmyname · 24/02/2012 19:31

Wilson is actually quite scary. Shock

moosemama · 24/02/2012 19:34

Grin at tickle you till you wee - it was tickle you till you fart in our house. I was famous for it! Blush

EllenJaneisnotmyname · 24/02/2012 19:36

Tickling or farting, moose? Grin

moosemama · 24/02/2012 19:57

Farting when tickled Ellen! Blush I had a cruel older sister you understand. Grin

coff33pot · 24/02/2012 20:16

wilson if you come down to tickle me please bring a first aid kit lol as tickling, touching of feet ALWAYS ends in extreme violence. I am also not a lover of the hairdresser fussing about so hair stroking is out too, which is another reason I have scary hair Grin

You have done your job though as the thought of it has seriously given me the idea of elastoplasting the SOR & Y on my keyboard incase I should use it again!

See now? if you had said I was coming down to kick your but it would have no effect at all LOL so thank you for making the right scary choices! :)

I have a funny picture of moose farting in tickle rythmn though hahaha!

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moosemama · 24/02/2012 20:36
Grin

Though it was usually anything but rhythmical, musical yes - rhythmical? Not so much. Wink

WilsonFrickett · 24/02/2012 22:23

Oh nooooo I'm funny about feet, there will be no touching of them. . Moose - Grin

tallwivglasses · 25/02/2012 00:00

Another hug from me coffee X

flyingmum · 25/02/2012 13:47

This stage is horrible and yuck but if it helps him get the support he needs and sets him on the road to achievement then you have to ride out the storm of emotions. I think doing things like the baking and lovely stuff is the best thing to do. It does get better. One day you will realise that you haven't had any negative feedback for AGES. It won't happen straight away but it honestly does get better (with some lapses like we are having today with flyingboy who is in zombie mode today). Do everything you can to minimise the anxiety for everybody. If he is less anxious then you are too. I'm off to try and see if zombie boy can ride his bike for a bit. It's making me feel a bit blue seeing this regression but I know it's because he did so brilliantly on the ski trip and is all used up.

mariasalome · 26/02/2012 08:56

Coff33pot, It will be ok. And your lovely dh and other kids need you and your ds to carry on being just who you are. This whole diagnosis malarkey is just about signposts needed for the outside world but the process of getting the most useful labels gets into our heads and makes life more difficult.

Your DS doesn't sound like he's 'complex' to you, and the fact you 'get' him is not just you recognising shared challenges, it's the product of years of concentrated love, work and reflection. I'm not spouting this, it shines through all your posts. Your own coping skills will wobble a bit because all your thoughts and energy on the family, means less energy for your challenges.

We have had some of this, am happy to chat in more detail if you pm me.

coff33pot · 29/02/2012 15:21

Thank you Maria :)

Well I have gone through the reports and photocopied them, read through to put them in chronological order so that dirty job is done.

Low and behold the SALT popped out of the woodwork to complete her second half of her assessment (which should have been last Oct) better late that never I thought. Mixed feelings on this. She has said with consulting ICD10 that she refers to and assessing him she agrees DS has Autism. (so now thats everyone apart from the main muppet who told me to get his hair cut and that will help his concentration)

Mixed feelings not because of her off the record dx (she obviously cant dx and like she said it takes 3 in a multi team to agree but ds has never got that far) but the fact that she is now discharging him. She has layed down suggestions of help to improve his generalisation, using "time to talk" and small group work for social skills, Insist school go back to using visual aids via symbols instead of pictures as that is what works at home and he is a visual learner, and the Language For Thinking rescouce to increase his verbal reasoning skills and to support his understanding of higher level questioning.

She said she could be with him for life but after liasing with OT and assessing DS He is totally verbal with no problems in that respect but she cant help his sensory problems and his autism :(

On a good note she is going to compile a fuller report for me to send to london within the timescale adding her views on DS re the autism and she promised she is going to back up the OT (that school are shrugging off) that a sensory diet MUST be followed. But thats as far as it goes....

Keep swimming just keep swimming............

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