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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

My Coff33cup has had his dx

61 replies

coff33pot · 11/04/2012 13:44

Well we are now either at the end or the beginning at the moment I dont know where I am.

My lovely boy has received his dx's
DS has Aspergers, ADHD, Upper body motor and vocal tics (Tourettes), Sensory Processing Disorder and Social Communication Disorder. What a platefull. He also has issues with writing and reading that they are concerned about.

They have measured his head, height and weight and he has to have a blood test down here to be transported to Maudsley for testing to see if there are any underlying causes, genetic wise, medical wise or illness wise that could be an underlying cause for this basketfull.

They have said that because he is young, with the right help and thorough support and understanding he could well avoid the necessity of meds but they will review as things go.

OP posts:

flowwithit · 11/04/2012 22:36

Wow just read your post. What a terrible time you have had. I was thinking you must be very strong to have stayed sane through all the negative stuff thrown at you and sadly how unfair this is for your Ds and your family.
Huge well done for getting this far and jumping so many hurdles. Stay strong!

Ineedalife · 11/04/2012 22:37

I am just so glad for you coff, not that he has all the issues but that you like me can now hold your head high and say " you know what, it is not me, my parenting or my family, it is a disability"

Knowing that has given me so much strength in the last 6 months.

You will get through this but if you need a meltdown, feel free, you deserve one.

Please take it easy for the rest of the holiday and keep coming on here.

NoHaudinMaWheest · 11/04/2012 22:53

Coff I hadn't appreciated until I read your last post just how much negative stuff from proffs you had been through. No wonder you had such an outburst today- you need it and deserved it. From my experience you will probably need some more over time before you can process it all. I do admire your ds coping with all the questions and tests. He must be a really brave wee boy (like his mother).

EllenJaneisnotmyname · 11/04/2012 23:16

You probably needed a big rant. I hope you feel better for it and can relax for a few days before school starts again. Give your DS a big hug from all his MN aunties, he may well prefer a virtual one. Xx

pinkorkid · 12/04/2012 00:02

Well done for keeping fighting for your ds. Not surprised you felt so angry today but you've been vindicated in all your concerns. Hope you get the apologies you deserve but meanwhile plan some treats and recovery time for you and all coffee family.

mariasalome · 12/04/2012 00:05

A big pat on the back for coff's mother's intuition careful noticing and hours of puzzling. I've seen all of those conditions in your posts... you realise that you'd correctly diagnosed that list way before you got to clinic?

I'm really sorry he has them all. It does start to get better when things are official, though the most recalcitrant of our naysayers weren't immediately convinced by the experts. It took about a year for each of ds1's diagnoses to become something they properly acknowledged.

justaboutisnowakiwi · 12/04/2012 00:23

This reply has been deleted

Message withdrawn at poster's request.

HolyCalamityJane · 12/04/2012 05:29

What a terrible terrible way your whole family have been treated all because you were simply doing your very best for your lovely DS. I hope they are all ashamed and you ram your DXs up their ........... Noses! You are amazing I would have crumbled by now get the antidepressants they helped me to stay sane.

yawningmonster · 12/04/2012 06:10

They have said that because he is young, with the right help and thorough support and understanding he could well avoid the necessity of meds but they will review as things go.

Thank you for posting this sentence coff33pot. I am a bit of an on and off poster but always end up coming back here when the sh*t hits the fan and I need some real advice and support which is so utterly lacking in the professional realms I am forced to associate with on behalf of my ds. We are in process of further diagnosis' at the moment and it is a whirlwind of emotion, mixed advice, and judgement.

You sound to me to be so much of want to be...an advocate for the needs of my ds...I hope you don't mind but I will keep an eye out for your posts as I think I may just learn a lot from you and I hope beyond hope that I can do what you are doing for my own son.

imogengladheart · 12/04/2012 08:16

This reply has been deleted

Message withdrawn at poster's request.

insanityscratching · 12/04/2012 08:34

coff33pot so sorry and so angry that you have been persecuted when you should have been listened to and supported by so called professionals. Your ds is a lucky boy because he has a warrior mum and you'll keep on being a warrior mum so that ds gets the very best outcome. Take some time now to rest and lick your wounds and gather your strength and spend time enjoying your boy and maybe when you buy the GP those biscuits you get some for yourself too.
Take care x

hazeyjane · 12/04/2012 09:08

coff33cup, Your posts have bought tears to my eyes. It shouldn't be this hard, but you have done so amazingly by your ds, and now he should hopefully get some of the support you have been fighting for.

Take some time to look after yourself.

Lots of good thoughts being sent your (and your families) way.

starfish71 · 12/04/2012 09:29

Just want to say am so pleased that you have finally got firm dx's for your son. You are amazing. Hope you will now get the support you and your son have always deserved. Take care of yourself while it all sinks in x

alison222 · 12/04/2012 17:07

What can I say that everyone else has not already done above?
I am so pleased for you that you now have a Dx and you know that you are not imagining it all, and at the same time as you have to get your head around it all in order to continue to try to get the best for your family. xxxx

WilsonFrickett · 12/04/2012 17:58

Oh Coff. What a list! I am so about the way your family has been treated too. Nothing to say except (((hugs)))

creatovator · 12/04/2012 18:18

at the way you've been treated and what you've had to go through. No wonder you had a meltdown after all you've been through. Seems like time to let your hair down as a family and forget everyone else.

Your are the best Mum.

Original poster

coff33pot · 12/04/2012 19:33

Well today is a teary on off sort of day. One of those laugh one minute and cry the next. Its wierd. I keep replaying what the proff said and it still doesnt seem real that I was believed. I think I am going to feel that way till I get it all in writing in a couple weeks.

I went down and watched my boy roller skate today. I have never seen him skate apart from up and down our house indoors with furniture everywhere and also this was Dad and Son time. His Dad (ex speed skater, stunts and poser STILL) started taking him 6 weeks ago and said he was a natural. I sat there for 2 hours with the biggest grin on my chops. Music loud lights flashing he was like some free child, figures of 8, crazy legs, dancing on skates, jumping, limbo, sweeping he put the teenagers to shame much to their disgust. This boy is clumsy running or anything PE wise but having no sense of fear has paid off on a set of wheels. :)

I think this has bucked me up this afternoon in thinking how lucky I am. When I go to see the GP next week I think I am going to have a good talk with him and see if I can make some difference down here. Even if it is just the GP passing round to the other GPs that when a parent comes in after seeing our local camhs and said they have doubts dont make them wait years but take their word and send them off to London. You never know it may help someone.

DH said something last night which surprised me as he is not the type to get emotional. He said think of DS as Charlie and he has just won a golden ticket. That ok it is sad but at the same time this ticket can back him up. He told me dont get mad get even, lay it all infront of the proffs and say nothing he said my silence would sink in more than losing it. I think he is right.

OP posts:

StarlightMcEggsie · 12/04/2012 19:35

After dx, we went on holiday and ignored it for a few weeks. If there is anyway you can do this I'd recommend it.

It's an honour to 'know' you btw. Your hell over the last 14 months may well have been unnecesary but the posts about your journey MUST have benefitted others as they have me and kept me going when swimming through my own version of hell.

SallyBear · 12/04/2012 19:36

Coff33pot - A beautifully eloquent post.

Original poster

coff33pot · 12/04/2012 19:37

BUT...........I am going to need a bit of elastoplast over my chops!

OP posts:

StarlightMcEggsie · 12/04/2012 19:37

Your DH sounds great too. What a lucky lucky boy!

imogengladheart · 12/04/2012 19:41

This reply has been deleted

Message withdrawn at poster's request.

Original poster

coff33pot · 12/04/2012 19:50

You know star? I think its the other way round. If I hadnt posted here late at night 16 or so months ago I can honestly say my head would have still been in the sand.

This board is precious and so are the virtual friends I have made in it. The advice given is a vital part. Everyone is different, has different ideas, different approaches, different methods. Some not good for some people are great for others. Be it legal, meds, therapies or links for investigation. Something clicks for someone.

We all got one thing in common. We have our perfect beautiful children and we are the strongest parents. When one feels weak there is a whole group picking you up. WE ARE ALL AMAZING.

OP posts:

EllenJaneisnotmyname · 12/04/2012 19:50

Aww, coff33... The skating sounds fantastic. Go get those professionals, but remember, revenge is a dish best served cold. (Not sure if that analogy makes sense here?) Oh well, don't lose your temper, anyway

You know, don't you, that all your posts are either helpful or supportive or both? I'm really glad to have you as a MN friend, especially in the wee small hours when I should be asleep.

bochead · 12/04/2012 20:03

Oh Coff - what an ordeal you've had to go through to get to this point, I really feel for you.

Can't help agreeing with your hubby on the stance you should take with cahms etc. I personally would calmly tell them I was looking forward to seeing their written apology in the post and then sit back and watch.

Now the real battle begins to get your kid the help needed .

Cut yourself some slack for the meltdown won't you? It's not often an ordinary Mum fights the world and wins Your new nickname should be summat like "Mama Rambo" or "Sarah Parker"(from the terminator films).

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