OT for Alison from Josie ( anyone else who is interested)

[Guest guest]

This is the letter I received, it may not be where you are at the moment at all

but it's certainly been a good reality check for me, many times. Bear in mind

that this was actually about me worrying that I couldn't afford to do ABA or

some other intensive ed. programme with Jay, but I think it applies to other

things we do too when we are trying to do so much At the moment I am only

doing homeopathy and SCD with Jay, I trust homeopathy 100% by the way,

and getting this diet started, well is all I can personally focus on right now.

Josie,

can you try and be a little gentle on yourself at this time. I, and I am sure

others on th list have been EXACTLY where you are. The shock, the grief, the

fear for the situation unfolding, can feel overwhelming. Plus I have no doubt

you are so goddam tired. You will feel guilty- we all do. I don't quite know why

we are wired this way but we are. we feel overwhelming grief for the life we

thought we were going to lead- the child we thought we would watch growing

up with little concern other than do they have lots of friends, will they keep

away from the bad crowd, are they going to be smart or sporty or cute? And

once we feel that grief we then feel terrible terrible guilt- because to feel so

cheated and so unhappy when you love the child SO much just feels like you

are betraying them. The burning desire to do everything in your power to fix

this is so strong. I am 'treating' my son- I am not sugesting we just accept.

But I

am saying that oyu have to grieve and you have to let go of the guilt and be

proprtionate in how you help your child.

My son is 9 now but it feels like five minutes since he was diagnosed. Those

first 2 years are a blur-sitting in front of the computer till my head felt it

would

explode, pleading for a diagnosis, pleading for some support- a therapist, a

treatment and then trying to do ABA and sonrise and gfcf and AIT and cranial

osteopathy and on and on. We all do it. But somewhere I realised that I was

issing Charlie. That my children were watching me and learning that you grow

up, you get miserable and that's it.

I realised that I had to calm this raging fear. I had to try to find one thing

each

day to approach with something like joy- however hard that was ( and it was

near impossible some days!!!!) and I ha to FOCUS!!!!!!!!

I had to be the person I had once been at work and through rigorous research

plus watching and learning from Charlie what he needed and then stepping

back and being ruthless I had to choose what to do and do it well.

Many people can d several things, combinng treatments and therapies. I can't.

I just can't. well i can if I also choose to be tired, miserable and joyless and

much as that would actually have been my choice I had to show all my kids

what happy looked like. Strangely this has helped Charlie enormously. I

became stupid and fearless and took screaming autistic poohing smearing

child out and sod what othere thought. ( my son Jay was smearing a lot at the

time) I cried sometimes even in public but

we did it and now he goes everywhere, Disneyland, the cinema, restaurants,

tea in Claridges. He's great and I wouldn't change him. But I ahd to change

my reaction to him and I had to let go of the guilt. Because the truth is that

if,

when you look at your child, most of what you feel is guilt I think they know

it.

Even as severe as he was I think he knew. And the first day I sat on the bed

with him and we traced raindrops going down the window and we both

laughed I think he relaxed and opened the door just a bit,

You have been through so much as we all have. But trust that it does get

better but doing your best is not the same as doing everything!

Don't let those thoughts feel ok in your head because w ehave to love him

and love the fact that we are their mums in order to enjoy what lies ahead as

best we can.

Honestly- I would not swap Charlie and whilst I would love to make him better

I will always be grateful for what this journey, this horrendous terrible

journey

has taught me about what we teach our kids through just living our lives. I am

a happy person now and my kids are happy loving people too- all of them. Be

kind to yourself Love .........

off to slip on my sandals and get into my laftan and beads.....................

Alison, I don't know your situation at all, and this may not have been

relevant.Take what you want from it, when I received this I cried and cried and

cried and cried. I did this for a while, overwhelmed and tears welled up all the

time when anyone showed my any kindness.

Whatever, it certainly is one of the most profound letters I have received and

has helped me such a lot, what a lovely lady!! love Josie xx

[Guest guest]

> but doing your best is not the same as doing everything!

Wow, this is such a pivotal statement and really speaks to me right

where I am now. It confirms that I am doing what I need to be doing

at this point in this journey we are on.

Thanks for sharing.

Sandy M.

[Guest guest]

>> but doing your best is not the same as doing everything!

>

> Wow, this is such a pivotal statement and really speaks to me right

> where I am now. It confirms that I am doing what I need to be doing

> at this point in this journey we are on.

> Thanks for sharing.

> Sandy M.

And doing everything can make you crazy if anything!

>

>

Carol F.

Celiac, MCS, Latex Allergy, EMS

SCD 6 years

[Guest guest]

>

> >> but doing your best is not the same as doing everything!

> >

> > Wow, this is such a pivotal statement and really speaks to me

right

> > where I am now. It confirms that I am doing what I need to be

doing

> > at this point in this journey we are on.

> > Thanks for sharing.

> > Sandy M.

>

> And doing everything can make you crazy if anything!

> >

> >

> Carol F.

You are so right about that, Carol. A year ago this spring we

started our neurodevelopement program. It was very intense program

that took me 5-6 hrs a day for the two kids. I cut it back and then

cut it back and then cut it back some more. Then we added SCD. I

made the decission this spring that we were going to have a summer

this summer. We still do some of our program but 3-4 days a week

and only for about 1 1/2 hrs a day then. We do SCD faithfully and

my two kids are making great progress neurodevelepmentally. We are

much more relaxed, happy and enjoying life.

Sandy M.

> Celiac, MCS, Latex Allergy, EMS

> SCD 6 years

>