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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Just been told toddler has ASD what a week!

33 replies

2boysnamedR · 09/02/2015 17:13

I'm not surprised or upset

It will hit me no doubt.

How I long for for my baby to call me mum before she turns 3. Ds is three next month and totally non verbal. He's never said mummy

A friend said I'm lucky I never get the why, why why questions. If only she knew what I feels like to wonder your child's voice sounds like

Seems more like the elder boy we won the appeal for has asd than ever now, which does hurt. Why I dont know.

Actually I do know why it hurts. He's 7. Years of fighting, no closer to a answer

OP posts:

Kleinzeit · 09/02/2015 17:24

Just wanted to send you

PolterGoose · 09/02/2015 17:31

This reply has been deleted

Message withdrawn at poster's request.

Babieseverywhere · 09/02/2015 17:44

{{{hugs}}}

adrianna22 · 09/02/2015 17:46

Hi 2boys, does your eldest have ASD?

I didn't realise you had two kids. I assumed your three year old was your first.

I can imagine your pain/ anger and grief of finding out your daughter has ASD too and the fight that you may possibly have to through all over again.

If it helps, DS is 5 and has minimal language, he still doesn't call me 'mum' as he finds it hard to pronounce, but he knows who I am and my eyes lit up every time when someone asks him "where's your mum" and he points to me.

You may like feel like giving up, like most of us do , but I can only advise that you keep on fighting. Never give up on speech too. I strongly recommend this site: www.teachmetotalk.com.

Ineedmorepatience · 09/02/2015 18:17

Feel your pain 2boys ((((()))))

Original poster

2boysnamedR · 09/02/2015 18:20

That's I will look up that link. Would love to throw whatever help I can at my toddler.

I haver four kids
Ds 1 is nt (within reason he's a character!)
Ds 2 I won the appeal for with dyspraxia

Ds3 has the asd diagnosis from today (via the phone)

Dd six months. Who knows what the future holds for her

OP posts:

youarekiddingme · 09/02/2015 18:44

(((Hugs))) I had no idea you had 4 dcs either!

Frizzcat · 09/02/2015 19:01

2boys

I remember when my ds had his ASD dx and the week after just kind of floating along not really feeling it, or anything tbh.
It will hit and you know it will. Look after yourself when it does, and you will feel better after a while. Then you get your armour on and start kicking arse.

pannetone · 09/02/2015 20:05

2boys ( I think your user name may be confusing some !) I knew you had 4 because you have the same as me DS1 DS2 DS3 then DD. And I know the mix of relief/sadness on getting a diagnosis that wasn't really unexpected. (DS2, DS3 and DD are on the spectrum.)

senvet · 09/02/2015 21:17

Aw 2boys hugs, hot chocolates and whatever makes for posted-support.

Look out for those repeating phrases. When my legs stopped working I remember getting stuck on 'I'll never go down a slide with my dd'. I'd wish I had a magic wand to make that flipping phrase go away. I was irrationally pleased when the neighbour moved and the slide in the next door garden was gone!

I haven't gone down a slide but (years later) it seems like such a small thing now after all the good times we have had.

You love her and she loves you. That is huge. Hang in there. My good friends ASD ds suddenly announced, on Christmas day, his first ever words: 'cranberry and mustard'. I think he was 4.

Best wishes, really, for all of you

MooMummyMoo · 09/02/2015 21:31

2boys I get it. I really get it.

My DD1 is non-verbal. I wish she could say mummy, I love you... She is 5 and for the first time last week I asked her a question (had she been swimming) and she signed 'yes'. I cried! I actually sat there and cried, I was so happy as it was the first 'conversation' we had ever had. And yes, I have had all those ridiculous comments from people (eg "you are so lucky yours can't crawl, I never get to sit down"! etc etc. Whatever the delay, people don't understand how hard it is)

And yes I understand the worries about your DD4, your baby. My DD3 (almost 3) is most likely ASD, and I find myself constantly looking at DD4 (18 months) wondering, analysing, hoping she isn't showing similar traits.

So just to say, you are not alone. It is shit, it is a fight, and you are allowed down days. But please also take strength from the inspiration that YOU provide to people on this message board.

You are not alone. Honk honk.

Original poster

2boysnamedR · 09/02/2015 21:41

I have been around since ds2 came along. I have a few more boys now I was expecting ds3 to get the dyspraxia dx because he already has a gdd dx. I still think ds2 is aspie but he can't get tested (keep trying) I guess I'm shocked ds3 will be dx before 3 - that's not a good sign for being mild asd is it? They was talking about asd preschool.

OP posts:

youarekiddingme · 09/02/2015 21:46

I think your username was a red herring re no of dcs but also you've fought such a good fight for DS2 I'm in awe you have done it whilst raising 4 children - I thought doing it with 2 was tought enough for you

Original poster

2boysnamedR · 09/02/2015 21:54

Gosh those cants hurt don't they? Ds2 never asked all the why questions. Never. I will forever miss them. Nice positive is that he's innocent and cutsie at 7. He's like a big toddler.

I hope ds3 will talk one day. I never really though he might not. He's a complex thing. Like a Tazmainian devil with blond curly hair. He lives by no ones rules ( a bit like me this week!) I admire that.

Oh for some hum drum drama eh? How Id love to moan about some crap for once like moaning about the mad mum in the 4*4 on the school run or that potty training isn't going well, or ds won't eat his organic fish pie I slaved over for hours lol!

No - it's complaining to my mp, formal complaints at school while preparing to meet with said person I have accused of misconduct, trying to get my la to pay up my tribunal fees and a random asd dx thrown in all before we see OT three more times this month, GOSH cardiologist, genetatsist and toddlers pead.

But don't worry, it's all in my head you know...

And breath....

OP posts:

Original poster

2boysnamedR · 09/02/2015 21:57

I'm missing my job. I want to go back for a break! Truth is I will not be able to going back when mat leave ends at this rate

OP posts:

ouryve · 09/02/2015 22:07

2boys

DS2 is almost 9 and was non-verbal until a year ago. He is starting to put occasional words together, now, though is very unclear because of undeveloped oro-motor skills. Also babbling his way through song and rhymes from the Night Garden :o He's never called me mum and I don't know if he ever will, but he reminds me, regularly, that I have a chin and hair. Thankfully not in the same place yet

senvet · 09/02/2015 23:09

2boys you do a fantastic job for so many people on these boards.
I always come away from reading these boards feeling very impressed and a bit in awe of the parents who manage to come on these boards and support each other as well as managing their own dcs development and battles.

I just think some of the mainstream folk could learn a lot and gain a lot by reading these boards. Actually most would be gobsmacked. Might make them tackle something tougher than the 4x4 problem.

Original poster

2boysnamedR · 09/02/2015 23:18

Thanks, nice to know your all here.

Ouryve - that must be so hard. I realise now that it never seems so hard in your own shoes as it's our normal life. I did feel very sad last week when I had to take ds out of signing group as he was rolling and screaming. I do bounce back.

I could just rip off someone's head if I get one more person cross me re my ds2 this week.

I just keep fighting on re the tribunal then I don't have time to think

OP posts:

Flook76 · 10/02/2015 10:00

((Hugs)) 2boys. I second that your advice on these boards is invaluable and has given me hope in difficult times.

Frizzcat · 10/02/2015 10:16

I'm missing my job. I want to go back for a break! Truth is I will not be able to going back when mat leave ends at this rate

Same here 2boys didn't go back after dd was born and miss work for the same reasons.

ouryve · 10/02/2015 10:33

2boys it hit me hardest around his 5th birthday, particularly as he was still quite physically frail at the time, too.

Apart from coat wars, issues with getting from A to B safely, teeth cleaning, random stripping off and accidents, constant goading of DS1, having to clear a pile of lego windows off the loo seat before I can relieve myself... he's rather good fun to be with, lately. I think a huge part of his development over the past year has been down to getting DS1 into his specialist school. I now have a couple of hours a day with just DS2, plus DS2 doesn't have DS1 trying to control him at school, as well as at home.

To be honest, I worry a lot more about "high functioning" DS1. He finds life bloody hard.

MeirAyaAlibi · 10/02/2015 12:04

Thank God. Diagnosis and (maybe) a suitable nursery. One thing (maybe two) that you don't have to fight for.

And really that it wasn't in your head/ copying/ a boy/ he'll catch up

We're off to clinic with ds2 on Thurs. Nursery talking about EHCP. Had portage. SLT & ot apps are coming.

All surreal- he's nowhere near as impaired as his big brother whose mainstream school still think I was mostly just over anxious about

Original poster

2boysnamedR · 10/02/2015 19:11

Ds3 is so much worse than ds2. Ds2 can cope in ms school right now, quite, placid (but with massive ability to explode in a matter of minutes. Luckily we can prevent that - mostly!)

Ds3 is very destructive. His vision and purpose in life is to follow the basic law of physics - all matter wants to revert to chaos! He's bonkers and it's never dull.

All kids are happy except my eldest nt boy. He has to put up with all sorts but is growing into a lovely compassionate person ( but he will thump them both if he he's had enough hair pulling!

OP posts:

MeirAyaAlibi · 10/02/2015 20:12

all matter wants to revert to chaos
Ah, that takes me back

chinuphigh · 11/02/2015 12:37

Hi. My son is 9, severely autistic, no speech and still in nappies. When he was diagnosed, i was in the worst kind of hell. I thought it must have been something i did. Even the MMR which i realise now was unfounded. I was in a really bad place. But in the long run, i really got my shit together!! I have 2DD,s older and no longer at home whom i adore. But the strength of love and need to protect was overwhelming for DS with his condition. I learned to drive. I fought for early assessment as i was told by one amazing Child Development Specialist, "early intervention is key".He was placed in a school specialising in ASD at the age of 3. My DD is amazing. I didnt want him medicated and as i have always been a runner, i took him to the local running track and we walked round, holding hands. We then ran the bends, holding hands.. and then full laps.. holding hands. Took 4 years of training and he now runs 5 miles cross country with me at least 3 times a week (more in the summer). He loves it and it really chills him out. Other runners we have got to know are in awe of him. He is nearly always smiling and loves his hugs. Over the years, i made my peace without realising. Things that were once important.. no longer are. I have friends with children that are clearly in need of help and support and sometimes it is soo difficult when the child has need but is not severe. I have seen first hand that it no less painfull or difficult to live with without support. You really have to fight tooth and nail for what your child needs. Big hugs to all out there in our position. Keep believing and fighting.

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