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SN children

So tired of people thinking its my fault

17 replies

Firsttimer7259 · 03/06/2011 15:30

I am a little sensitive on the issue, but I am also really starting to resent the implication that whatever is up with my daughter is due to something I am doing or not doing.
Shes 18months old, has a 6 month development delay. I noticed a few things at 9 months and got a referral. So far the peads have nothing specific in terms of dx, thats probably a good thing. IN fact they were really astonished with her progress last time so I must be doing something right. But of course in the dark hours of the night I wonder what more I could be doing, whether I should be doing something differently etc etc etc

Into this comes my family with their foot in mouth disease.
Recent choice quotes: "Do you play with her?" (no dad I just leave her on her own in a corner)
"Can you get some therapy for unpicking what has gone wrong with the mother daughter bond" (my sister response to fact that DD has been clingy and upset just recently)
Plus the endless looks I get at playgroups etc when people ask me her age.

I hate that everyone seems to feel free to weigh in with their tuppence worth.

Any thoughts? Do I just need thicker skin? Should I stop going to group stuff? I already find I dress her much better than I used to (almost like I am trying to signal that I do love and care for my child)

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silverfrog · 03/06/2011 15:45

it is hard when they are so little.

I remember the same things with my dd1, when she was a baby (she is 7 soon - how did that happen Shock)

the thing to remember is that people do mean well. they will have heard about bonding/importance of play/whatever, and are trying to help by suggesting it.

it doesn't help.

but they have not been where you are.

well done you on noticing things so early, and getting referrals in place etc. you are obviosly doing things right, as your daughter is happy and progressing well.

all toddlers have a clingy/unsetled phase. does your sister have children herself? how are relations generally with your family? before children? would you be able to tell them, calmly, how you feel when they say these things? what they are meaning to say, and how you are hearing it, may be 2 very different things (I do NOT mean you are being oversensitive - goes back to the bit I said about they have never been in your position) - you need to train them up in how to communicate effectively Grin

on the groups front - if you are finding them too hard, don't go. they are a hotbed of competitive parenting at the best of times, and if you are finding that difficult to deal with, then don't.

I did carry ongoing (to one, plus tumbletots) because dd1 enjoyed it. and because some weeks, it was the only way we got out of the house. I tried a couple of others, but they were horrific.

you skin will thicken over time (sadly) - the toddler/pre-school years are the hardest, ime. (I used ot read that on here back when my dd1 was 15/16 months, and think I was just being placated. but I have found it to be true - whether because my skin has got thicker/i have come to terms with more I don't know)

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justaboutWILLfinishherthesis · 03/06/2011 16:25

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Triggles · 03/06/2011 16:25

unfortunately it doesn't get much better when they're older. When he's stressed and/or has a meltdown, I hear all sorts of comments ranging from tuts to comments about kids nowadays not knowing how to behave and so forth. Angry Rude people are everywhere unfortunately.

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elliejjtiny · 03/06/2011 20:40

(((hugs))) I remember that time well with ds2 and starting to get it with ds3 now. Is there a SN group near you? I went to one with DS2 and it was my lifeline. Me and another lady from there went to a mainstream group together which was lovely.

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TotalChaos · 03/06/2011 23:25

I think as well people find it easier to get their head round it being a relatively easily fixable issue ~(you needing to brush up your parenting) rather than the more scary issues of developmental delay/possible disability.

Re:playgroup - imo not at all necessary at this age, it's the one to one attention from adults that helps most. so only go if you feel you and/or your DD are benefitting. I also found that first time mums can be a bit of a nightmare with the competitive parenting, mums too older kids tend to be better.

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imawigglyworm · 04/06/2011 00:32

I really feel for you, as im in a similar position. DS3 is un-dx gdd etc. Hes just turned 2 has only just mastered crawling, not babbling so I would say hes at the year old mark possibly?
I hate going to family parties etc, my close family are fine but grandparents, aunts, etc give the old 'lots of kids are slow he will catch up' or the more distant relatives will give you the whys he not walking/feeding himself look without actually asking the reasons.
I agree unless you are finding playgroup useful then I would give it a miss, you have enough to deal with without having to add to the stress. Definately look out for a SN group, meeting others in a similar situation could help.

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Firsttimer7259 · 04/06/2011 10:26

Thank you all, this really helps me feel better. I know a lot of the unhelpful family commentary is more about them than about me and DD, and its also about our often unhelpful family dynamics. Its just right now when I need advice so badly I attach more weight to these comments than I would otherwise.
We have had lots of appts this week and talking issues through with professionals is really helpful at the moment. Like being explained to by a physio what exactly is stopping her from crawling, moving etc. Advice on how to engage and play with her to help her. Stops my brain whirring around trying to figure it out. I think I need to build a support network thats actually supportive. A lot of the people I am currently asking about things are not helpful, despite good intentions. Also what could they really say that will help. If someone acknowledges shes behind I feel defensive, if they act like its nothing unusual I want to scream at them. How to do this I dont know but it will need doing.
The playgroups, oh dear, I wasnt a fan of playgroups even before all this. Now its often really tough. I hate being stuck in the baby section with the endless new mum conversation. I feel very 'been there, done that, bored now.' I keep thinking I should expose her to other children. But I am miserable there and I think she picks up on it and cries lots. I think I will take mumsnet permission to stop doing this! Smile

This is all so difficult I dont really know how to get through it. Our childminder just gave notice. I cried. The whole day.

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justaboutWILLfinishherthesis · 04/06/2011 11:31

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SuburbanDream · 04/06/2011 11:36

Sorry to hear you are going through this. You are not alone - I had all those kind of unhelpful comments with DS2 (Aspergers) before his diagnosis, ranging from the veiled criticisms of my parenting ability to the "oh he's just naughty/willful/you were just like that at his age" stuff.

As for the playgroups - they should hopefully be fun and interesting for your DD and you. If they aren't - don't go!! You are right - if you are miserable and tense it won't be enjoyable for either of you. Are there any local SEN groups that might be more suitable/sympathetic??

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Becaroooo · 04/06/2011 11:59

I had this with ds1 (now nearly 8)

I just stopped going to baby clinic/toddler groups tbh. I didnt enjoy it, I didnt like the people and the HVs were useless. I went because I felt I was "supposed" to Hmm I stopped seeing family members who made hurtful/ignorant comments.

All infants go through phases of being clingy....my ds2 who is nearly 3 is going through such a phase atm and it is hard.

My ds1 had quite significant developmental delay as a baby but has caught up really well. People make such hurtful comments in the guise of being helpful/concerned...like your sister.

You will develop a thicker skin.

And remember, at 4am ANYTHING seems possible!

x

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oodlesofdoodles · 04/06/2011 20:49

Firsttimer - I wish I had been as perceptive and persistant as you are being. I had my head stuck firmly in the sand and was quite happy to believe all the 'och he'll catch up' and 'they're all different' nonsense comments.
I think a clingy child is a good attachment sign - she know's who she wants to cling on to and that's her mummy.
Good luck - I hope you get guidance soon.

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StarlightMcKenzie · 04/06/2011 22:03

Referal at 9months Shock. You're a fabulous mother. Well done you is all I can say!

In terms of the rest, well, they don't understand, but you'll hear it some more probably. For some reason, particularly in this climate, it is more comfortable for people to believe it is somehow the fault of the parents. It is certainly the cheaper scenario.

You do know that a 'delay' is not the same thing as a 'halt' right?

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leiela · 05/06/2011 08:45

I have to admit i don't cope well i usually snap back with something clearly sarcastic.

My ASD son wasn't walking age 2 !! I remeber my mum saying something stupid like "do you try holding his hands and walking him"

I think my reply was something like "No mother i'd NEVER thought of that, what the hell would i do without you"

Tbh my family made alot of stupid foot in mouth comments in the early days but don't any more because they quickly learned i was very sensitive to them.

TBH i do the same now even with strangers, i've pretty much had enough of the tutting, if my son has a meltdown in public (very rare tbh) and strangers comment im very quick to put them firmly in their place, tbh they are usually so embarresed they disappear but i do think people need to learn to keep there opinion's to themselves when they don't know the situation.

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Firsttimer7259 · 05/06/2011 10:51

Got really tearful reading this. Its all so hard at the moment and no one is much help. They just dont get it really. I can see that a lot of the stupid comments tell you more about other people's parenting issues than about your own situation, but at the same time I am so desperate for input/insight that I am so influenced by it all.

Thank you, thank you. Part of me worries that I am doing a crap job and its all my fault and if only I had done it all differently we'd be fine and this wouldn't be happening. So positive feedback like this really really touched me. TBH I think I have been lucky to have a very supportive and intelligent (!) HV and GP. From what I see on here thats not so usual.

Plus lots is going very differently than I thought. I had wanted to be a very relaxed, easy-going parent. Refused to read all the baby 'manuals' cos I thought they were all really ideological and prescriptive. Now its all so different to what I imagined.

Starlight - can you explain the difference between a delay and a halt? No one really tells me clearly what the implications of the delay are. And if I google it I freak out completely

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StarlightMcKenzie · 05/06/2011 11:12

Well 'delay' means continuous progress. It might not be at the rate of their peers and they might need some extra years to mature but they won't stay as a 2yr old for the rest of their lives iyswim. A delay means that skills are learnt later, not never learned. For some children the time lag might be longer than their lifespan but usually not and carefully targetted teaching and learning can help considerably.

The trouble is that resource-wise it can be difficult to access what you need to you to help you carefully target the teaching and learning. This is what many of us here are struggling with, but the SEN board is an excellent resource for trouble-shooting problems and next steps and you CAN get good at teaching yourself and researching the possibilities. It puts a tremendous burden on you as a parent, but I hope this can give you some hope too.

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Firsttimer7259 · 05/06/2011 11:41

Thanks starlight that helps. Not sure why NHS cant just explain that to me as simply. Am currently still just bewildered at the options and really in the dark.

Nowadays I sometimes look at the behaviour/development board and snort with laughter. I used to go there and lurk hoping someone might post something relevant to us. Now I know I needed this board.

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leiela · 05/06/2011 12:15

My son is dyspraxic as well as ASD and he has a delay on anything physical around 2 years i belive though they have never giving it an exact number.

He didn't walk till 2.5, didn't ride a bike till 10 and even now at 11 he can't tie his own shoe's but i do belive he will get there in the end, it's just going to be somewhat later than the other boys.

tbh you should be very proud of yourself for spotting it so early, i kept telling the expert's to go to hell and refused anything was wrong for the longest time... granted this was because like you i got tired of everyone blaming me, but rather than seeking out help i bolted my doors stuck my fingers in my ears and sang the "im not listening song" (his dsypraxia was dX at 5 and his ASD at 10)

You've done really well getting it recognised, you love your DD so what if she's developing alittle late? she'll get there and your doing your very best to ensure she does.

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