Just so far behind

Emalenna · Mar 26, 2010 4:25PM

Hi guys

Just reading through your posts and looking at pics on fb make me realise just how far behind Bryn actually is.... I know that all children develop at different rates but there is no comparison with your little ones.... I guess I'd been trying to concentrate on all the positive steps he's making (and i'll continue to do so) - like his language is starting to improve but when I see your 2 year olds and what they say or get up too then I realise why the pre-school and the hv were so sure that he has developmental problems.

He has a hospital appointment on thursday to find out if his toe-walking is physical or neurological - I'll let you know how that goes.

Sorry for the downer post just feeling a bit low at the mo and some of Bryn's behaviour is starting to get to me - although he is the most loving little boy at times and I wouldn't swap him for the world

Thanks for letting me get that off my chest.

xxx

waiting4baby · Mar 22, 2010 1:40PM

I feel just the same em, please don't let it get you down, children are different and as long as they're loved and supported they can do amazing things whatever they're circumstances. Trust me, I know x
Good luck with your appt, whatever the outcome it's a good thing he's being checked as he'll be on the books and you'll be able to request any extra support you think he may need without long waiting lists. Thinking of you and wishing you all the best. X

alioli123 · Mar 22, 2010 3:23PM

I really hope they can put your mind at rest on Thurs Em. It is hard when other chn are doing more than your own (Alfie talked very late and still has problems saying new words, bless him) but you must look at what he can do and be glad he can do those things. It's good you're focusing on the positive, though it's hard, it's the best thing to do.
Try not to worry and let us know how he gets on xxx

mamapink · Mar 22, 2010 4:31PM

Sorry you're feeling fown Em, as w4b says children are all differentand are amazing regardless of their abilities. I think if we were to get all our los together we would be surprised at the wide range of skills they have. Definately try and focus on the positives as Ali says, and fingers crossed your appointment on Thursday helps.

Big hugs xxx

maxnjacksmummy · Mar 22, 2010 5:08PM

Big hugs!

I can't really add to what the others have said - all children and different amazing indivduals and with yours and your families support and love behind him I am sure bryn will do brilliantly. It is great you have the professionals involved and on side as I am sure he will get more support and help as and when he needs it.

Let us know how Thurs goes

Emalenna · Mar 23, 2010 3:10AM

Thank you all.... guess I was just feeling a bit overwhelmed with it all.... thursday's appointment will be the first of many and even if it a structural problem with his feet he still has to see all the others about his development - sorry letting it get to me again! :roll:

I know there will be a huge variety in what our children can do - and hey I bet none of yours can run backwards looking at the lights as quickly as Bryn can!!

Gotta look on the bright side - literally in Bryn's case!

Anyway.... I really hope I can meet up with some of you - still don't know the exact dates but we'll be in Lancs during the first 2 weeks of August..... You have to have a meet up (even if it's only a small one) just so I have an excuse to leave the ils for a day!!

xxxx

xxxElxxx · Mar 23, 2010 5:04AM

Em,

I will echo what everyone else says and that I think you are being very positive. Hope you get some answers soon.

maxnjacksmummy · Mar 23, 2010 12:18PM

I'll def meet up with you in Aug - I soooooooo know that need to escape the il's!!!

Well done for looking on the positive side - chin up!

blueybluey · Mar 25, 2010 8:12AM

I was going to ask when all your appointments were and stuff, kept being on my mind. Really hope all goes well today and that all goes in a positive direction to give you lots of reassurance & Bryn lots of support if & where needed. Lots of love, big hugs xxx

Emalenna · Mar 25, 2010 2:53PM

Hello.. well we had the orthopaedic appointment today... and... there is nothing wrong with the structure of his foot/leg/muscle. He will be fitted for shoes that will teach him to walk 'normally' but other than that they cant do anything. She pointed out that it is an early symptom of autism and had anyone mentioned this - especially with his behaviour - which of course they have.

So that's one appointment down and another one to make... I very much doubt I'll hear any more now til after Easter.

Thanks again for all your support. xx

MM+1 - I look forward to it!

alioli123 · Mar 25, 2010 6:02PM

Well, that's one thing not to worry about, as that could be a long painful process had he had to have an operation etc.
Who will you be seeing now if they are concerned about autism? If you need any help as to what to ask when there, Chez can help, as I'm sure MM+1 can.
Keep us posted and try not to worry x
PS I'll try to stay Lancs-bound for some of your visit so we can smuggle you out of the ils company for a day!

Pootle_OB · Mar 25, 2010 6:06PM

Em - i'm really sorry I haven't been on here for ages, been rubbish about keeping in touch with people.

Again will echo what everyone else said, children all develop at different rates as they are all unique, which I know you know. I felt after we all met up last time that Philip seemed way behind Bryn and Maddy and in some ways still is, he definately can't run backwards! Interesting about the walking though, took Philip to see the paediatric physio team a couple of weeks ago as he walks on his toes most of the time (i hadn't thought it was a problem but the HV did so referred him) she referred him to the optotist (not sure if thats the right word!) who thinks that it is a habit thing rather than a physical thing and he is having insoles for his shoes to begin with although she has said that special shoes are a possibility if the insoles don't help. I haven't heard of a link between walking and autism before.

Did have one thought though, what is Bryn like about having his hair cut? Several of my friends have children (varying ages from 4 - 25) on the autistic spectrum and many of them have talked about their difficulties in having their hair cut, also problems with having feet measured. may be that this is purely coincidence but though i'd mention it.

Again i'm sorry for being so rubbish at keeping in touch with everyone, you and all the babies (and big babies!) are never far from my thoughts

Emalenna · Mar 25, 2010 6:29PM

Ali - I'll let you know the dates as soon as Dave has sorted them out with his ex. Bryn will be seeing the SENCO at the pre-school, the ed pschyologist and the paediatric doctor - not sure about anyone else as far as autism goes - he still has to see the hearing and speech and language therapists too though.

Helen - no worries - Bryn hates having his hair cut (or washed) - he is an absolute nightmare! He's a pain in clarks too - he was such a pain they got the size wrong once and I had to take the shoes back a week later. Bryn's been able to walk/run backwards about as long as he's been able to walk/run forwards! - it's one of his many little quirks! lol xx

maxnjacksmummy · Mar 26, 2010 6:14AM

Glad that the walking is not a physical thing cos as Ali says that could have been along hard painful road.

With regards to tiptoe walking being an early sign of autism - yes it can be but so can a million other things cos autism is such a MASSIVE spectrum of disorder (I am yet to meet 2 autistic people who have the same difficulties - it always amazes me that it is one syndrome!!!)

The pre school seem to have covered all bases for you with assessment etc which is ACE.

Hope the shoes will help with his walking (how long till he can get those???)

Stay cheerful!

Emalenna · Mar 26, 2010 7:02AM

You're right the pre-school have been brilliant and my hv has been pretty switched on too so I've been really lucky.

I'm not worried about the assessments as at the end of the day he's still Bryn and although he can be seriously hard work at times, so are most children! If they come to the conclusion that he is autistic then he is and at least a stratagy can be put in place to help us help him.

The pre-school are sure he will be statmented so they will get their extra funding which is fantastic (when if finally happens) as Bryn will get one-to-one help all the time.

As for the shoes...erm - who knows?!! lol It could take a while but that's not an issue - especially as I've just bought him a new pair of shoes!

Always try to stay cheerful - only down occasionally and then it passes - it's usually down to hormones or tiredness though anyway!!

xx

Hollys_mummy · Mar 26, 2010 2:18PM

Ive only just read this thread, it sounds like you are getting great support from all the proffesionals and you sound like you are handling thing really well. Sending huge hugs your way and I keep my fingers crossed the rest of your appointments go well xxx

mamapink · Mar 26, 2010 4:00PM

Really glad Bryn doesn't need an op Em, and that you are getting such great support.
Made me chuckle reading about the hating having their hair cut - Brendan used to love having his cut but the last few times has kicked up such a fuss that we have given up. Today I decided it had to be done as it was such a mess so I just went for it - brivbed him to sit in his chair with a chocolate biscuit and ended up just giving him a grade 4 with the clippers! Eeeek! Thankfully it doesn't look too bad, and it grows to fast anyway. I did think it was probably a pretty similar experience to shearing a sheep though lol!

Keep smiling hun xxx

waiting4baby · Mar 26, 2010 4:25PM

Hi em, I'm glad there's nothing structurally wrong but also really sorry there are still more avenues to explore. It is however fantastic that you are being dealt with now and by the sounds of it very quickly and thoroughly which is fab. The statement would be fab, we are having to get this sorted for zachariah too. I don't know whether it's a long process but see if you can get some informationon on 'first opportunity' they're a charity that fund one to one help for children up to 3 in nursery our peadiatrician got this sorted for me and we're just in the process of looking into it for next term. Really hope you get some useful information and positive feedback.
Zachariah can't run backwards- in fact he's only just learnt how to run forwards lol, he also gets hysterical with foot sizing, he's not too bad at haircuts but we specifically go to a quiet village one and I hold him on my lap

take care x .

Just so far behind

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