Feeling overwhelmed

[LizK]

Anyone else get like this? Sometimes just feel so fatigued by the whole ASD treadmill we are on and wish I could have a 'holiday' from it . There's been a lot of ASD stuff going on recently so I guess that's why. I just submitted 10 pages of Parental Representation to the LEA for DSs statement which has nicely focused my mind on what he can't do . We're doing Earlybird at the moment and having regular weekly visits from the SEN preschool teacher. Even at nursery the staff usually spend at least one pickup going over in detail about how he's got on that week and what they've been doing. Don't get me wrong I'm incredibly grateful for all the help we are getting , it's just that I feel a bit 'autismed out'. Am reading Mulitcoloured Mayhem at the moment, got the local autistic society newsletter and membership stuff today to pour over and got a hospital appointment to look forward to next week and speech therapy followup the week after.

 

Want to switch my brain off for a few day. Don't think PMT is helping either!

 

 

Liz x

[BusyLizzie100]

Know what you mean, LizK! Today we had a meeting with the Ed Pysch about my elder son, then my younger son's Annual Statement Review, then a meeting with the autism advisory teacher about my elder son again, then bought a book about ADHD to gen up about possibilities re my youngest son. Tomorrow I've got another appt with a child psychologist.

 

Meanwhile I'm trying to get it together to prepare eldest's parental submission for application for Statutory Assessment, having just finished younger son's for his review...

 

It is coming out of my ears, too! I feel like my brain is being mangled. I could do with a holiday, too.

 

And what DO we do when hubby and I get a couple of hours to ourselves? Go out for lunch and talk all about the meetings we've just had. Lovely lunch, but we just can't escape! My perfect idea of a break would be a week or two on a Caribbean island by myself. Don't think hubby's too impressed! And I'd only fret about what was going on in my absence.

 

Hey ho.

 

I suppose we can try and cheer ouselves up by telling ourselves that we are being proactive, supportive parents doing the best for our kids. So keep up the good work, cos we're doing a good job.

 

Lizzie

Edited February 22, 2006 by BusyLizzie100

[Lynden]

<'> Liz

 

I just found myself thinking similar today - we had a quiet spell just after Christmas but now the appointments etc are all kicking off again. We had orthotics last week, have SALT tomorrow, Early Bird info meeting next week and OT and Paed appointment the following week and it just seems one long continuous cycle. I am so glad that we get all the help that we do but sometimes I really wish we just weren't in the position that we needed it.

 

How you finding early bird?

 

Lynne x

[Bullet]

I just wish that things would start moving with Ds1. He's been referred for SALT since last August and despite hvs chasing things up, we are still waiting to find when his first appointment is. The only positive thing is it's now become apparent he has a communication disorder rather than a general delay so they can tailor the help to that.

[millyz]

I FEEL LIKE I'VE BEEN BANGING MY HEAD AGAINST A BRICK WALL FOR NEARLY 8 1/2 YEARS NOW.WE SEE CARDIOLOGIST, NEUROLOGIST, OTHOPEADICS, ORTHOTICS, EYE HOSPITAL, PAEDIATRICIAN, PSYCHOLOGISTS, PSYCHIATRISTS, EPILEPSY SPECIALISTS,CAMHS AND GOODNESS KNOWS WHO ELSE. THEY ALL HAVE DIFFERENT OPINIONS, PASS THE BUCK, CHANGE MEDS, AGREE/DISAGREE ON WHAT THE LAST DOCTOR SAID. MANY OF THEM HAVE LEFT AND YOU GET VARIOUS LOCUMS AND START ALL OVER AGAIN. IT'S BEYOND A JOKE. AND STILL QUESTIONABLE DIAGNOSIS. COULD BE THIS THAT OR THE OTHER.........WELL TRY THIS FOR A WHILE ANYWAY!

THEN YOU HAVE ALL THE EDUCATION SIDE WITH ED PSYCH,SENCO,EBD OUTREACH, PHYSICAL DISABILITY SERVICES,LEA,STATEMENTING,IEP'S, - FIGHTING WITH THE SCHOOL. NOT KNOWING IF YOUR CHILD IS BEING SUPPORTED, TAUGHT OR JUST REMOVED FROM THE CLASSROOM TO MAKE IT EASIER FOR EVERYONE ELSE. THERE IS NO SUCH THING AS INCLUSION!

 

SORRY - THAT WAS ONE HELL OF A MOAN.

 

BEEN CRYING OVER THIS AGAIN. EVERY SO OFTEN I HIT THAT POINT OF SHEER FRUSTRATION.

 

MY DAUGHTER IS SUFFERING ASWELL. I THINK SHE IS REALLY DEPRESSED, HAS LOW SELF ESTEEM. HOW IS SHE EXPECTED TO DEAL WITH ALL THIS. I WAS WORRIED ABOUT HER FUTURE, I DIDN'T THINK ALL THIS WOULD HAPPEN AND PROBABLY MAKE MATTERS WORSE THAN THEY WOULD HAVE BEEN ANYWAY FOR A KID WITH HEART PROBS,EPILEPSY AND CP.

 

WHAT ARE WE TO DO EH? WHAT A LIFE!

OH - AND WHEN DO I GET TIME TO EVEN THINK ABOUT MY 2 BOYS AND HOW THEY ARE?

 

NOT HAVING A GO AT ANYONE. SOMETIMES IT HELPS TO WRITE IT DOWN. FEEL A BIT BETTER ( WELL PROBABLY NOT ACTUALLY) NOW THAT I HAVE BASHED THE KEYBOARD IN PURE FRUSTRATION.

 

THANKS IF YOU DID READ THIS - SORRY. YOU CAN ALL CALL ME MRS MOANY!!!!!!!!

 

 

XXXXXXXXXXXXX

[CarerQuie]

Group hugs to all who are exhausted from the unrelenting battle of getting support and provision for their children.xx

[UltraMum]

I'm feeling like this too - just had my parents to stay

 

I let J have longer on the computer and playstation during their visit, as the one afternoon I got J to socialise and play a board game my mother complained that she couldn't concentrate with his bobbing up and down and generally messing around.

 

Last night she told me that I let him spend too long on the computer and that he'll never learn to socialise if I keep letting him escape to the computer/TV/playstation - this despite the fact that he had spent an hour at school on social skills y'day and then half an hour at a friend's house and then half an hour at the youth club on social skills etc as well.

 

I left the room and went upstairs and but said nothing ...

 

This morning she started again - I ended up sitting in the supermarket car park in the car, after dropping J at school, as I couldn't face going home

 

Eventually I gathered up my courage, went home and told her that - yes - he had spent too long on the computer but only because I knew she couldn't cope with his behaviour and tantrums if I tried to get him to socialise.

 

I also said that she ought to try spending more time with him - I've had ten years with J and she's probably only seen him for ten weeks of those ten years - then she'd be qualified to say what I should and shouldn't be doing. I finished by saying that I need support rather than criticism.

 

My mother has now gone home in a bit of a huff, which I'm sorry about, but I'm glad I answered her back for a change rather than sitting and taking it ...

 

Now I just need to stop fretting about it, which is easier said than done and I've got to face the counsellor again tomorrow...

[Malika]

Our life is like a rainbow we have blood test days, GP days Results days DR C days and DR N days and next week coming DR G day this is a new one (absolutly exciting!!) and prescription days and chimist days and Teacher days Senco days OT days and optometrist day,review days and many telephone days to trace up all the above.

 

However this is such a lonely planet.

 

Liz Lizzie Milly Laverty take care. <'> <'> <'> <'>

 

Mrs Ramble

[BusyLizzie100]

MotherEve, just wanted to say, well done you for saying your piece to your mother. That took nerve and guts. No need to fret about it - let her do some fretting now.

 

Can you come and sort my mother-in-law out, now???!!!

 

Lizzie

[Malika]

Hi Mother Eve <'> <'> <'>

 

Sorry that I did no see your post last night , I hope your mother will start thinking about your situation and see things in a different light, you are right you need support not critism but may be the later is a little bit more complexe to give than the former .

 

It is even more difficult for grand-parents I have notice to accept that kind of DX at least I have seen it with my mother when H was younger she use to come sometimes for 5 weeks in the summer and could not understand his behaviour at all, but when the DX come she said well he is all right why do they say this......????

 

Other wise bless her she is very helpful but as an retired teacher I think H behaviour seems completly unacceptable.

 

Take care Mother Eve. <'> <'>

 

Malika

[Guest hallyscomet]

Sending you all some of these <'> <'> <'> <'>

 

H.

[jen]

I turned off from ASD last week so I could concentrate on the revision for my exam. Come Monday evening a request from my childs school (written request in his diary) asking me if I could accompany my child on a trip to a museum 3 days later because his LSA had to go to hospital for an operation and she would be off sick for ?1 week.

 

So next day(Tuesday) I had to cancel all my work appointments for Thursday. (Its a good job I have a boss who understands).

 

Wednesday sat my exam and then came home. Post informing me that SENDIST are reviewing my sons case and may be hearing the disability tribunal with the SENDIST and could I send more information. (disability tribunal should of been in March so may now be heard in June).

 

NO CHANCE OF TURNING OFF FROM ASD FOR A FEW DAYS NEVER MIND A WEEK.

The pleasures of being a parent of a child with special needs parent.

 

Today I received a report from the Ed Psy which is very good but some pages are missing so now I will have to chase that up tomorrow.

 

Jen

 

Jen

[asereht]

I sometimes feel my life has become a mission to get help and deal with my Asd sons needs. I worry that my older children and my husband seem to have to take a back seat most of the time,as no matter how hard I try ,I haven't got enough time to devote to them although I really do try. Like sometimess I'll arrange to do something with one of them and something happens with my son and it has to be cancelled ,also most things have to be planned round him. I know it's not his fault and I don't mind really but I worry that ,the rest of my family will grow to resent him . I think my daughter does at times although I know she does love him.

 

Theresa

[Malika]

Hi Theresa, <'> <'> <'>

 

I have got a very similar situation in here, and it has become so hard to make any plan.

In trying to share my time with all, there is little left for myself and when I have time what do I do I come on the forum.............

 

Take care.

 

Malika.

[ksasnic]

Tired too sooooo tired.. what with inbetween of having hospital appointments for my daughter for braces and also backwards and forwards about her broken wrist, car M.O.T., mother visiting, cat wanting to be fed all the time, Nick speech therapist appointments, work, Nick A.D.D. clinic appointments, school parents evening, trying to get school transport for son, daughter needing me to drop her off here and there and attend (god forbid with Nick !) her college evening do which she and a friend is organising for coursework... breathing, housework, my own drs appontments, my sons dentist trip to pull the tooth thats bad, another dentist trip for my daughter to have teeth pulled before the hospital start her dental work... food shopping (nightmare with Nick), helping out friends, taking Nick to cubs, working...my relaxing time (supposedly)-craft group, sleeping (whats that ? )... and all the other stresses of life.. oh yes and now a second opinion meeting with hopefully a dr but from Sunderland !!! .. etc I don't know who I am, where I am, what I need to do, where I am going or what the hell I am supposed to even be thinking....

 

so that taking into consideration I feel very much like everyone else here it seems- so thankyou for making me realise that I am most definately not alone as we are all going through pretty similar stuff.... and Yup the holiday idea sounds good - but I don't want a lovely foreign holiday, I don't even want a holiday here in this country but what I do want is a holiday anywhere I can just sleep and recharge my batteries !!! Johnny Depps house actually would do for starters and then the kids can go and spend the time with my mother.... a holiday for me but payback for them !!! lol

[jen]

yet we go on holiday and come back stressed because there has been new places, new issues MELT DOWN +++

 

Jen

[asereht]

Malika, gladto know I'm not alone.I toospend my free time on here

 

 

 

Oh well off to bed,up earlyin the morning. See my daughter off to college at 7am with a cup of tea to get her on her way ( it's her first year) did it for eldest son last year, but he see's himself out now.Not that they ever wanted me to be doing this,but it's a chance to spend a few minutes alone with her.

 

Then it's showered,dressed and make sure son ( asd) is ready ,then off to another bl***y meeting about said son.

 

Shouldn't complain,could be worse.

 

Night,night all.