vulnerable, scared and willing to move to china

[eandz]

So, our lovely therapist may be quitting on us and I'm not sure why. She is incommunicado till Wednesday she says and I'm feeling quite sick.

I didn't realize how stupid it was for me to not have a back up! I feel terrible for not having a back up. We're struggling with money and therapies and nursery as it is, what in the world do I do?

Does anyone know where to start? I'm thinking of UK Yaps, because at least it's consistent. I don't know where we'll find the money but I feel pretty desperate. What do I do? Someone, anyone tell me--my Hair is actually started falling out on Sunday. I am absolutely scared.

OH and we're still in the process of requesting a statement and although our nursery are jerks because they didn't get in touch with Therapist last week, I'm worried that now that she may quit us, we won't get her input when it comes to statementing.

Well, DS was given a working dx for Autism and I've been using someone who was giving excellent support. She was my go to person. Now I'm stuck without a clue of where to go. He's three today. Three. I have no plan!

I guess the first thing I should do is find a good replacement/new strategy/way of never being in this situation again.

I feel like I'm back to square one and the helplessness is unbearable.

Hi eandz, didn't want to read and run. Even if lovely therapist is going, she can do a report fir your file. And probably recommend a successor or at the very least a bit of guidance as you swiftly write an interim plan b.

And your DS mow has a working dx plus you have mn sn and a lot more knowledge and understanding of your son, his problems nd the options to improve his chances in life.

You feel helpless cos the person who supported you in the train wreck of peri-diagnosis and helped you get to this new and much-improved situation is now jumping off the rescue train. But it'll be ok. You're the one driving it.

Eandz - happy birthday to your DS.

What kind of a therapist is she?

eandz - you have the power here. What on earth are you talking about:

"OH and we're still in the process of requesting a statement and although our nursery are jerks because they didn't get in touch with Therapist last week,"????

YOU write to the LA. You can get a model letter from www.ipsea.org.uk and tweak it. You say 'I'd like you to do a Statutory Assessment of DS' SEN.

Take control. Write the letter, then you can tick that one off your list.

I'm in London, please if anyone has anyone good recommend them to us!

thank you Lougle very helpful link.

How could you have a back up? You can't go around slotting replacements into place for people who might not even leave!

Take a deep breath. If she is leaving she will give you notice and will probably recommend someone else. If she is leaving she will no doubt still input into the statement as one of DCs 'people'. She isn't just going to walk out of the door on Wednesday, never to be seen again. And if she does, you will do what you can until you find a new person.

We are on a long journey with our DCs. Sometimes we'll be alone with them, other times we will have trusted advisors to help us, but it will always be our journey and we will always get there in the end. Honest.

And your not on your own, you have us! and we'll always have China!

eandz Your back up plan is to BE your child;s therapist. Most of us have learned on here that WE are their KEY WORKERS. We can turn to others to advise and support but ultimately WE have to be in control.

We cannot, unfortunately, pay for our children's disabilities to go away, although we all try to sometimes. I looked at the stack of autism books on my shelf the other day and realised that I had not read many of them, but had felt comforted buying them as if their information was somehow anti-autism and would send energy upstairs to my ds when he was sleeping and make his autism less.

We also cannot trust ANYONE to care about our children as much as we do, not can we expect our children to be someone elses sole agenda as it is ours.

Advisors will always come and go. The only consistent thing, even in China, is you and I'm afraid that makes it your responsibility to use advisors as advisors to help you, not as people to take your problems away.

eandz You have lots of great qualities that your ds will benefit from. You are determined. You see things through. You do have other resources (more than some) which I know aren't at the level you are used to but you are clever and you CAN figure it out.

And we're here. As your ADVISORS. But we can't do it for you.

Starlight, how aptly put! You have just put perfectly into words what I am just beginning to realise myself. We are just heading into our 2nd year with our ds- 11yrs- having only realised over a year ago that something was not quite right ( dx of AS ) and I have just been thinking lately that at the end of the day, its only us really doing all the work. You are so right- we are the therapists! We can only ever take advice and then try and put it into practice. No matter how many experts we see! EANDZ- your ds is only 3- plenty young enough to benefit greatly from all the help which he WILL get in the future. You are well able to fight for all the help etc which he will need- have confidence in yourself! And there's great info available on the internet and of course here on MN.Take heart- you will be fine!

Happy birthday to N

eandz I second what star and penney said...yes, we get hlpe for our dc and advice and tips and strategies to help them but 9 times out of 10 we are the ones who implement those changes.strategies/help....I know thats the case for me with ds1.

I can see why you are upset, but there are many, many other people who could help you out there!

Good luck!

I'll be back soon. Thank you for all your advice so far, it's helpful and making me feel better but I have soo many other issues regarding this situation--i really don't think i'm functional.