just need a hug, feel so alone

[angelPeacock]

Im sorry this is a moan thread, but i realy feel so alone right now.

i have had a rough time of things with DS from the day of conception. Not half as bad as some parents i know, and im thankful for that, but theres always "something" going on.

i had a bad pregnancy, and was ended up being induced 4 weeks early, which i blame myself for and "if i hadnt.....maybee all this wouldnt be happeneing...."
as soon as DS was born i knew there was something wrong, but everyone said he was fine.
we had problems feeding (which turned out to be my fault since i dont produce milk), he ended up on a billy bed for jaundace, and then back again for dehydration (due to lack of milk). Then started suffering chronic reflux so we started on medication.

He was a realy good baby, hardly cried, hardly moved, could be left on the floor on a baby mat while i cleaned and washed up etc, wouldnt cry in the morning to get up, wouldnt bother about having to go to bed. This should have been a sign something wasnt right, but i was suffering PND and i just thought i was lucky.
He didnt roll over till 9 months, sit till 10 months, and walked at 16ish months.
at his 8 month check i mentioned about his eyes wobbling when he looked sideways.......by 15 months we had a DX of nystagmus.
at 2 i was concerned about his hearing and at 3 he had his first lot of grommets.
from then on, whenever i mentioned any concerns about his development/learning, i was always dismissed by my friends/family/proffesionals as "but you have to remember he hasnt had the best start with his vision and hearing problems!"

he doesnt need glasses for his nystagmus, he has 20/20 vision, he just tires easier having to controll his wobble. its stressfull for him, not particularly anything to do with not being able to see.....if you get me.

anyway, last feb i moving DS school (he was year one then). lots of reasons, but i wasnt happy with the school at all.
He settled in well, and they have done wonders with him. He is on SA+, has an IEP, a member of the sensory services team sees him in school regularly and gives the school a report to ensure theyre doing everything for him visually, but about the same time last year, i started the process of getting the Pead involved with him.
It was based at the time on DS behaviours in school, and while that has since improved, it has made me look again at all the things i had seen before but pushed aside becuase no-one else was listening.
I firmly believe he has HFA/ASD.
I know that he is mild, but i have been pushing for over a year becuase i know that a formal DX opens doors.
He is behind in school, and again this is being bushed under the carpet with "well im sure he will catch up in his own time" and "boys are always slower" but i dont want this to snowball....if hes a year and half behind now....then by the time hes in year three it isnt going to get any better, its just going to get bigger and bigger....school are giving him 5 sessions a week extra...thats 1Xliteracy and 2Xnumeracy (or vica versa) and 2XTA led sessions reading.
i dont feel i can talk to the SENCO at school, and although i love his current teacher, sometimes i can feel she is dismissing this too....she finds him easy to handle, which again is GREAT! but this can giver her a false sence of things, and when he moves onto the next teacher, things could go downhill very easily.

sorry that this is so long winded and boring, but i think everyone round me is fed up of me....i cant talk to anyone without getting a look of "here we go again". I dont want to be that person who everyone thinks is wanting to be the worst off coz i know im not by any meens!

[IndigoBell]

Hi Angel,

Have a hug :)

My boy also has nystagmus and ASD. The nystagmus doesn't bother him very much - because to him it's 'normal'..... But he does need to sit in the centre of the room (not easy for the teacher with his fidgety ASD behaviour )

Keep talking here....

Don't let anyone brush you off. You are right to be concerned......

He's getting a lot of extra literacy and numeracy, so the school are concerned.

The problem is there's no easy answers to what to do with these problems. They're doing what they 'should be' doing. If this doesn't work, they actually don't have much else they can do.... :( So they will try to brush you off, rather than admit that they can't help him......

[utah]

I would start keeping a diary and am a believer in trusting my instincts but as a word of warning this opening of doors if he is dx is not alway the case. My son is autistic with servere language disorder and have still had to fight and plead for everything. I would say you are not alone as there are many parents who are in exactly the same position. you say he has sensory problems does he have social interaction problems. Is he still falling further behind even though on action+ if so could you apply for a statement. Maybe contact parent partnership and ask if they could mediate between school and yourself.

[bochead]

aaaw hun! Have a hug cos I've gone through similar except my lad's behavior is now so unmanageable they dunno what to do with him! (SALT etc still seems too complex a notion)

I had morning sickness, noon & night till I went into labour, no fluid for the last 2 months of preg and then failure to thrive due to dairy intolerance. Sorted the dairy intolerance & I had the perfect wee baby (if a little slow on gross motor skills and undersized). I honestly felt SO blessed throughout nursery school cos my lad was so well-behaved. Now I realise he was TOO good iykwim - his first "terrible 2" tantrum wasn't till he was 4.5.

Push, push and push again. I wish I kicked up a real stink 3 years ago when the PCT cocked up over refusal to assess him properly instead of thinking cooperation, collaboration etc was the way forward. I was a nice, polite lady & the product of my reasonable upbringing when I should have been yelling from the roof tops. We are taught as kids to respect authority. Now I am finally kicking up a stink it may already be too late.

[angelPeacock]

thanks everyone, it realy does meen a lot having replies...i didnt think anyone would get to the end of my post lol.

i just have been sat here all morning trying not to cry, becuase it wont do any good...
bochead, thankyou, im the same, but i can shout loud if needed, but when you have been ground down with so many people telling you your being paranoid etc, your voice withers...keep shouting and im sure you will get there...i think i just need to learn to shout again...

indigo, thankyou, i know what you meen about the nystagmus being "normal", its not that that is the problem is it....why cant others see that! DS is also fidgety etc, but he has to sit on the left of the white board.

utah..he doesnt get on well with kids his age...hes better with younger kids or a lot older / adults. what i meen with opening doors, is that you can actually turn to someone and say "DS has .." and say it with conviction, rather than atm i can only say, "i think he might....."
i may just get listened to, iykwim.

i have his next peads app on the 7th july. we have had the pead out to see him at school a few months ago, this next app will be the first since that visit. and we had the questionaire sent to us and school......what should i be asking for / making sure happens next? should i ask for OT referal to check DS clumsyness (can pedel bike but not balance without stableisers, can use cutelry, and is trying to use knife, can hold cup, but looks awkward doing everything, falls over a lot, his physical ability compared to his 4 year old sister is SO immature!, and just seems to look awkward all the time).....should i sugest SA to school if his levels havnt moved in 12 months? or should they be trying something first?

sorry again for another long post, thankyou MNetters, xxx

[IndigoBell]

He should see an OT. Most kids with ASD also have dyspraxia. The OT should be able to give you some help....

I totally agree about the dx. I suspect my second son has ASD, and the only reason I want a dx is so that I know he actually has it and I'm not mad....... ( I know the dx itself won't bring in any extra support....)

Is he in Y2? Do you know what his levels are? (You'll get them in a few weeks if you don't know now)

A statement is not normally about lack of academic progress - though it can be. It is often about all the other stuff you mentioned. Basically if you think he needs more support than he is getting, then you should apply for a statement.

[angelPeacock]

thanks, at his last parents evening i asked for his levels since that was arround the same time as his last peads app (so about 3-4 months ago) his levels were....writing 1b (only just moved up from 1c), numeracy 1c and literacy 1c. yes he is in year 2. i asked her to explain the levels since i hadnt heard about them before and she explained that they were the levels he was at at the end of year 1. i asked what if he didnt move by the next parents evening which is near the end of the year,,,,so coming up soon....and she simply said "alarm bells". i asked her this morning if she could get his levels now for me, since his next app is 7th july, and will ask her again next week if she hasnt given them to me (she is admittedly a little scatty and has even said she will miss DS next year becuase he reminds her about everything...he forgets nothing haha)

im the same about wanting to know im not mad...i want some recognition. i know there are some "benefits" to having a formal DX round here with support groups etc, i have just been in touch with a local group who take kids on without a DX with ASD but help you through the process and you have to already be under pead/OT/CHAMS etc but its a group run by 2 mums (been going for many years) so isnt run by LA or anything. and DS starts swimming lessons next sunday with other ASd kids and hopefully i can get to meet some parents.

Im aprehensive about applying for a statement as his behaviour in class is being managed well with his current teacher, im just concerned about his learning, maybee this might change by next year with a new teacher,

i think i will ask for an OT referal at the next app...thanks xx

[IndigoBell]

Levels of 1b and 1c at the end of Y2 are pretty bad. :( (Not bad enough to mean you automatically qualify for a statement or anything - just pretty bad. Less than 5% of the population leave Y2 on a 1b or less.....)

Apply for a statement. Today. Yourself :)

Also ring up parent partnership.

In order to try and keep school on side, I emailed school, and told them that parent partnership had advised me to apply for a statement (which was true), and that this was the letter I was going to send, and was there anything they wanted me to change........

[angelPeacock]

i think i will call parent partnership, i dont want to rock the boat, but i know that sometimes you have to.
i will see what his levels are now, and if they have improved or not, (i know it will be about a week or so before she gets back to me with them) so that will give me chance to make an app to see parent partnership face to face, im not as good explaining over the phone lol.
thankyou for your help indigo, it honestly meens a lot! :D
xx

[utah]

with other parents I have met they have found the triats more noticeable at age 7 which could explaim your concerns growing. I know you said it is "mild" but to be honest the parents I do know who have HFA they can have difficulties with their child's self esteem, mental health, so it is good that you are so concerned even if the profesionals/school are not. The statement is not only good for extra support but the assessment process can introduce other professional to assess and even provide support for your son.

[angelPeacock]

utah, i think that DS has grown more noticable over time, but i suppose thats becuase you notice the differences more as they go through stages and you see other children more with them being at school etc IYKWIM.

i have phone parent partnership, and they are going to contact school and get back to me.

i wondered if you have to already be under certain health proffesionals for them to request reports from, or if they request that the child be seen by others once a statement is requested....

[runningonmt]

i just have been sat here all morning trying not to cry, becuase it wont do any good...
angel my love if you wanna cry please go ahead - Sometimes it helps to get some of the pent up frustration out with a good bawl (especially if the kids are not about).

We are only human, and we do the best we can each and every day - sometimes it does get overwhelming and being on MN helps me enormously to remember that we are not alone in this. We are your friends who do understand and support you 100% in your quest to improve life for your DS. Some days we have more energy than other days - sometimes we are a lot more positive than others but be fair to yourself - no-one can function at 100% all the time. Today you are having a dip and that is expected, understandable and in a funny sort of way actually healthy. Give yourself a break, try and give your brain a rest for today and know that tomorrow you will probably wake up with renewed vigour and a lot more enthusiasm.

Knowing that you have a whole heap of friends out here, day and night, means that you are ALWAYS free to have a rant when ever you feel the need without having to feel bad about it - sometimes it is more beneficial to rant with people that understand as well as sympathise - some of my friends in the 'non-cyber' world just dont get it - we do though honey.

You ARE doing a fantastic job - dont stop - but dont beat yourself up for feeling the strain from time to time. Big hugs to you, and your family. We are all with you on this journey x x x

[angelPeacock]

runningonmt.....love the name!

thankyou, :)

it does work venting on here, i still feel tearful but i have smiled and acheived something (calling PP) which i wouldnt have done if i hadnt posted on here.
i think its partly TOTM thats made it worse today, but its also the worry that there is only 6 weeks left of school, i am a worry wort i think :)

i agree that its by talking to people who understand that makes it better..

i think an early night and your right i will wake up tomorrow with gusto lol xxx

[mariamagdalena]

It's easy (but not very constructive or accurate) to blame yourself. And we find the most peculiar reasons to convince ourselves that we are to blame for our children's developmental problems. I think it's a cycle of grief thing, and somehow we all go through it.

If you ever have any doubts, have a look at the weird and wonderful theories other mums have come up with. Stick guilt in the search bar for this forum and have a look through. Luckily, once that stage is past, it becomes much more straightforward to just get on and do something contructive.

[angelPeacock]

mariam, i will do that. xxx

[Triggles]

angel - feel free to vent on here whenever you need it (heaven knows I certainly have! ) This is a good supportive group of people here with lots of knowledge between them all as well. We all go through the ups and downs (and often the downs seem quite massive and prolonged, I will admit!), but it always seems to help to share it here.

Hope you're feeling a bit better and stronger soon.

[angelPeacock]

Thanks triggles

i am fairly new to posting on here, but i have found this to be true, especially today.

thankyou everyone for being here xxx

[unpa1dcar3r]

Hi Angel sounds like you're coping very well with a very difficult situation and for that you should be proud. It's so hard at times to see light but you will get there and will draw on stengths you never knew you had...
Has your son been tested for anything? I ask this because the way you described your pregnancy etc sounded almost identical to me with both my boys; elder boy induced due to me being so bloody ill, younger son came early cos I fell down the stairs at 7 months pregnant carrying elder boy at 3am 2 days after moving house lol broke my ankle too.
Anyway my boys have Fragile X syndrome, their milestones were delayed, e.g sitting up, rolling over, crawling and walking. Of course speech was is remains a problem but not all 'eff exers' have speech problems. I wondered if he'd been tested for this?
Of course I know there are a zillion different reasons why he is the way he is but I do feel that more testing should be done for FXS as it's the most common cause of inherited learning disability (believe it or not) and is actually becoming more diagnosed over the years but still not enough.
You can look up their website at fragilex.org if you want to and have a look through to see what you think.
Anyway I wish you well, you're not alone and we all feel like crap at times. So don't ever be ashamed or embarrassed about how you feel, it just means you're very human and a very loving mum.

[runningonmt]

angel - I just wanted to pop in and say I hope you are having a better day today - you (and others on this thread) are in my thoughts.

Hugs to all of you. x

[angelPeacock]

unpa1dcar3r - wow thats a random name lol. thankyou very much for your post.
im not sure about fragile X testing, but he has been tested for genetic test(s), again not sure exactly which one / ones, becuase i asked for the XXY. I came accross that while googling (as up pre DX mums do..or at least i hope its not just me lol). i will ask at his next pead app which have been tested and ruled out.
the main reason we have been looking as aspergers is because DH brother was DX when he was little.
i will definately look up the web site though, thanks.
thankyou also for the kind words, it honestly does meen a lot :D

runningonmt - thankyou for popping in, i am having a more positive day, had more bad news, but not to do with DS, so feel a bit down, but am a lot better than the other day.

Thankyou for all the kind words and lift up, i really do appreciate it thanks xxx

[unpa1dcar3r]

Morning Angel, hope today is better for you hon.
My name is a play on unpaid carer cos that's what I am lol! Like most of us on poxy carers allowance! Get all the cr*p n none of the paid holidays/sick leave/union support and so on...
It's possible your son has been tested then, but yes it's always worth an ask isn't it just to be sure. Ask them to write down all the genetic things he's been tested for cos they're so easy to forget.
My older boy got tested for 7 diff things but the only one I remembered was cystic fibrosis so when that came back clear I breathed a big sigh of relief but then 3 months later got a random letter in the post, 4 lines long, telling me he had FXS and I don't even remember them mentioning that one!!!
Weathers flipping rotten here today but I'm gonna be stuck in younger DS's bedroom finishing the decorating anyway lol

[angelPeacock]

oh yes...i get it!! very cleaver huni. :D
i will ask them to write it down for me, i bet it was a very big relief with the CF, i cant imagine.
weathers sooo changable here atm, one min its lashing down then the next its warm and (not sunny) bright.
I hope you had fun decorating. i have a long while before having to do that again, we only move in here in april and the kids got their own bedrooms for the first time...so theyre both decorated for now! lol.

[unpa1dcar3r]

Well we never thought he had that anyway cos he was so sturdy, most CF sufferers are small and sickly lloking the doc said. But yes it was still a relief.
Hope you're feeling brighter today. The weather here is bloody horrible; just put all the washing out n it's piddling down but I'm past caring lol, it can stay there now (I'm such a rebel hahaha) and gotta take hbbys car in and a 2.5 mile walk back so i might get a bit wet lol
Bedrooms all done, thank goodness, got littluns bed delievered so hubby gotta fix that up tonight...
Onward and upward...;)

[angelPeacock]

Well the sun is shining here today...albeit windy, at least its not raining for now.
DD has a party to go to and hubbys taking her, and mother in laws gonna take DS to the cinema, he will sit still (just fidget with sweet packets etc) and concentrate for a full film if its at the cinema, he loves it. it does supprise me realy since its relatively dark, and very loud, but im glad he likes it, his dads a film nut so it must come from him hahahaha.
glad the bedrooms finished, hope DS likes his new bed...and i hope your 2.5mile walk wasnt too bad xx

[unpa1dcar3r]

Afternoon Angel. The bed was broke! Son had massive meltdown for over 2 hrs which actually went on for nearly 4 but screaming and smashing things for 2 hrs. Of course it was all our fault and we were every effing this that and the other under the sun!
So have spent the entire day (while they were at club which is like once a month) trotting all over town trying to get him a bed which they have in stock and i can get in the car! Not as easy as it sounds!
Managed it in the end and got home with half hr to spare, being hit on the head with a headboard all the way home lol.
Elder ds had massive meltdown this morn refusing to get on bus for club, took 3 of us, me, me daughter and the escort half hr to get him on!
Hubbys gonna be dead pleased when he finally getshome from work and he has to put the bed together!!! Ended up paying way more than I could afford really but had to be done for issues of sanity (mine) and problems with tantrums (him)
Otherwise the threatened torrential rain didn't happen yet, been gorgeous all day so that's one good thing haha.
How's your weekend so far? It's good that your DS will sit still for that long. Elder ds loves movies but younger one wants to go home as soon as he's ate his sweets!!!
Gotta love 'em eh ('cos I'm told it's illegal to push 'em down the stairs)

[angelPeacock]

aw huni, i hope it gets better for you now and i hope this bed is ok.
i know what you meen about not realy being able to afford things but you just have to....i have started a swimming class (story for another post) with DS on sundays, today was the first one, it has actually worked out GREAT, but the £3 a week extra is always going to be a pain, as is the £5 a week for his karate he needs to start.....not only coz hes fixated about starting it, but i know it will help his co-ordination and stuff. on top of that the £3.50 a week for DD gymnastics argh! will i EVER be able to spend money on me again?? hahaha
glad the weather help out for you, and its been lovely here too.
im looking forward to next sunday, its out wedding anniversary and were going to alton towers...hubbys works was planning a trip and we just HAD to go, it was fate it was on out anniversary hahaha. kids are sorted for the night before, which meens we can even go on my mums birthday meal out! shame mum has to collect them at lunch the next day, shame for her i meen with a hangover hahahaha.
and im sure that if you put padding down the stairs and a net to catch them the it might just class as a gymnastics move hahahaha :)