Yet another diagnosis.

[naiwen]

I am sorry this is a very sooky lala post so feel free to look away now :o.

Today Edward got yet another diagnosis, he has sensory processing disorder.

Unlike failure to thrive or BPD or hypotonia this is not a solely physical disability, while SPD is physical it is part of the behavioural spectrum of disabilitys.

He also has problems with his attention span and we need to really work on that so he doesnt end up labled at ADD when he is 3 or 4.

Of course the physio gave me lots of suggestions of what I can do to help him which is wonderfull and she is going to get him into weekly sessions to help him.

I just feel like this is never going to end, for 19 months the diagnosis just keep on coming and no sooner do we get him of home oxygen then something else goes wrong.

I do physcial threrapy at home, I give him meds, I take him to appointments, I moniter his breathing, I try to help his speech along and now we have this attention and sensory stuff to work on and I just do not know how much more I can cope with :gloomy:.

I have been on the verge of tears since we got home from hospy which is crazy because a DX does not change who he is but the shift from physical to behavioural disabilities seems to have thrown me into a spin :gloomy:.

I just want him to be a healthy, happy, normal child that can eat and communicate and go to school one day and I feel like that's slipping away from us :gloomy:.

Sorry for the sook :o

[greengables]

:hugs:
Im sure you will look back when he is a strapping healthy normal 18 and remember how he would stress u out as a baby!

[NibbleCurlynBub]

You are an amazing Mummy Julie.. :hugs: :hugs:

[WorkingClassMum]

You are right. A Dx doesn't change who he is.

A non-Dx wouldn't mean he doesn't have what he has.

A Dx is a good thing - you have a name for it, you have a plan of attack and a goal.

But it also sucks, that Edward has another hurdle.

You (and all mummies of sn kids) are exceptional in your ability to keep on keeping on.

You also deserve to be allowed to have a rant and a tany too.

Lots of :hugs: for you all - I just know you'll take this in your stride and you'll overcome it all.

I wish I had wishes to give away - I'd wish a whole bunch over your way

[Lil07]

I read lots of your posts and always think how strong and positive you are. You're an inspiration really and that along with your determination will most definitely rub off on your little man as he grows.



Keep your chin up and stay positive. :hugs:

[sockstealingpoltergeist]

You are right. A Dx doesn't change who he is.

A non-Dx wouldn't mean he doesn't have what he has.

A Dx is a good thing - you have a name for it, you have a plan of attack and a goal.

But it also sucks, that Edward has another hurdle.

You (and all mummies of sn kids) are exceptional in your ability to keep on keeping on.

You also deserve to be allowed to have a rant and a tany too.

Lots of :hugs: for you all - I just know you'll take this in your stride and you'll overcome it all.

I wish I had wishes to give away - I'd wish a whole bunch over your way
:iagree:

:hugs:You are a great mum and he is lucky to have you.

[Leisa21]

:hugs::hugs:You're a great Mummy, I'm sorry you're feeling so awful. I really dont know what else to say :hugs::flowerz::hugs:

[SimplyMum]

Like many others have said- you are a great Mum but I don't feel that was ever questioned. You have always been a great Mum- and I can't think of one hubber who would disagree.

Edward is lucky in so many ways still. He has a fantastic Mum, and when his Mummy tucks him into bed after giving him 'monster hugs' (that's what we call them in our house), and an 'I love you'- although he can't say that back to you just yet, you can tell by his eyes, and I'm sure they have 'I love you' all over them.

[naiwen]

Thankyou all so much for your kind words :o.

I know I will get used to this and adapt but right now it really hurts.:gloomy:

I look at Edward and see so much love and intelligence and if I cant get him enough help and support or do the right things he could end up being labeled as ADD and treated like a problem though school. I can't let that happen to him when he is such a gentle soul, he just finds it hard to concentrate.

I love him so much :crying:.

[Nowhere]

HUGS julie, Sory to here another one added to the list, Sensory intergration disorder isnt fun i know all to wellwith miki

Did they talk to you anout weighted blankets and brush therepy that sort of thing

[naiwen]

She wants me to work on textures with Edward specifically his feet, tickle them, brush different things against them etc, he is hypersensitive so he toe points and hates people touching his feet.

Should be interesting LOL.

I am hoping the feeding therapist on Thursday will explain how it affects him orally.

We will see OT as well I think to help him.

[NibbleCurlynBub]

Perhaps a clam-shell sandpit might be a good idea then? :detective:

[naiwen]

We have one LOL.

You name it we got it hehe.

[ElizaDoLittle]

You are right. A Dx doesn't change who he is.

A non-Dx wouldn't mean he doesn't have what he has.

A Dx is a good thing - you have a name for it, you have a plan of attack and a goal.

But it also sucks, that Edward has another hurdle.

You (and all mummies of sn kids) are exceptional in your ability to keep on keeping on.

You also deserve to be allowed to have a rant and a tany too.

Lots of for you all - I just know you'll take this in your stride and you'll overcome it all.

I wish I had wishes to give away - I'd wish a whole bunch over your way
:iagree::iagree::iagree:You AMAZE me hun! Try as hard as I can only imagine it would be, to focus on the fact the early u find out the better. xxxxxxxxxxxxxxxxxxxxxxxxxxxxx for Edward

[misskittyfantastico]

Thankyou all so much for your kind words :o.

I know I will get used to this and adapt but right now it really hurts.:gloomy:

I look at Edward and see so much love and intelligence and if I cant get him enough help and support or do the right things he could end up being labeled as ADD and treated like a problem though school. I can't let that happen to him when he is such a gentle soul, he just finds it hard to concentrate.

I love him so much :crying:.

I can't imagine what a blow this must be, after so many blows. You're allowed to grieve and hurt... just have to remember that he has YOU. You're his advocate - a bloody formidable one at that.:hugs:

[Benji]

:hugs::hugs::hugs:

Naiwen I only just found this thread.

Life just isn't fair on you & Edward. He is such a special, special little man.

He is just beautiful.

[reAllytee]

:hugs::hugs::hugs::hugs::hugs:

Edward has an amazing mum who will get him through all of the obstacles ....

Yep another damned obstacle but you will overcome it !

[studyingECS]

:hugs::hugs:

[CaitlinArai22]

He not only has a great mum, he has a mum thats smart enough to take care of all this nice and early before it becomes a bigger problem.
if you look at my bro, and half his mates, most of their probs were in the first 5-10years, and then settled down, because the diagnosis had been made and they could start to deal with everything, they knew what was going on, etc. (obviously this is different for everyone tho)
obviously you know this, i only mean, there is a light at the end of the tunnel. it must be really tough copping one thing after another, but the sooner you get it all diagnosed, the sooner you can put it all together and work out a working life and growth plan that works with ALL E's limitations/needs etc.
Do take these opportunities to have a good cry though - for you and for E. Its a tough situation for both of you, i'm just glad his little soul found its way to a mum that was strong enough and smart enough to take care of him properly.

also, there are more and more kids (depending on yur area) going to public school with learning/behavioural difficulties. i think teachers tend to say ADD/ADHD if they dont have any idea what causes a childs actions - i've heard them say it about perfectly "normal" children. Most teachers are great though, and i'd say as long as they have an understanding of E's conditions, and needs, they wont label him as a problem child, but a sn child. when people can say "oh this is because of this and this and the best way to deal with it is this" they're less likely to get frustrayed iykwim? and if you do see someone treating him like a "problem child", gimme their number, and i'll give 'em a problem :laughing: