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Here are some suggested organisations that offer expert advice on SN.

Think it's time for me to talk about sn. Embarrassed and feeling like a crap mum.

(18 Posts)
WrongWayUpside Sat 08-Nov-14 22:51:30

Please don't less of me, or out me if you recognise me from another name, I'm feeling stupid already.

I've had a lot of comments about DD (2yrs) from sources, and I've been pretty thick skinned. MY HV referred her to physio... but in my area it's one referral form for all and the referral panel sent DD for a multidisciplinary assessment (they had previous hospital reports, I've spoken to a SALT drop in so they had info beyond the form). I've been adamant with the specialist HV from the Child Development Team that DD is fine, she's been prodding and referred DD to a makaton course... I sound like an idiot but I said DD was fine and asked them to discharge DD from the CDC. She took all the information to panel again, and they refused to discharge DD and said they were 'very keen to see her'.

A comment 'we only want the best for DD' has really cut into me. I do! I feel like everyone I talk to has fought for their DC to have support, and now I feel like an awful person who's tried to stop help and I worry it's marked my card too as a parent with the team.

I'm getting ready to listen now, it's just been WHAM from 'all ok' to 'multi-dsicplinary assessment', which has been hard to digest. Everyone has jumped in two feet first with the presumption that I've been worried and trying to get dd assessed. I've also realised just how many people, from children's centre, to SALT drop in, to audiology (glue eat), to children's centre staff have flagged her in conversation to the HV, when no one approached me and just seemed to adore DD (she's tiny and smiley). DD is a smiley happy girl and it's easy to just enjoy her without any worry at all. I think her brother also does everything for her too. She was discharged from a well respected hospital at 11months with a lot of reassurance, and that's been my amour that she must therefore be just fine. Now it's been cracked finally I see more and more, little subtle things like staff saying 'ooo, don't go in DD's space!' and gently redirecting other children or seeing DD won't EVER go in the same space as an unknown child. Or that other children don't have to use their hands to go up tiny steps, or they look easily in conversation rather than thinking if they avert their eyes and sit really still people will go away On the ages and stages questions she'd be flagged in the one for 12 month olds in more than one area.

Has anyone else had a rocky start. Or am I THAT parent. I worry they think I don't care about DD or neglect her, when it's just I adore her and couldn't accept any perceived fault. I do LOTS to stimulate her, I knew she benefited but I saw progress and have seen her as within the normal range. I've been happy to be told about xxx who didn't talk etc. until they were in school etc. I knew deep down she needed extra teaching, and I've done a lot with her compared to the others, but I saw it as just 'her'.

Debs75 Sat 08-Nov-14 22:59:32

It's so scary when professionals suddenly start pushing for tests and they seem to have their own language and don't realise you have no idea what is going on.
They do know you love her and want the best for her but they also know they need to act quickly as early intervention is key. If I had left it up to DP they would have been the same. He loves DS and will do anything for him but it took him 2 years to admit that something was seriously wrong. I did all the appts and I pushed for things to happen whilst he would say lets wait and see.

fairgame Sat 08-Nov-14 23:23:06

I've been through a similar thing with DS. As soon as he started school he was flagged up and they wanted to apply for statement and refer for an ASD assessment. I was very resistant as i just felt he was struggling to settle in school and that it was just a phase and it would all get better. Luckily school were just as stubborn as i was and didn't drop it.
I don't think they ever thought that i didn't care, just that i was in denial. I attended all the appointments and meetings they wanted me to so they knew i was doing my best, it was just that my idea of best and their idea of best was slightly different.
IME they won't keep pushing unless they really feel that there might be a problem. If you see the number of threads on here where parents are desperately trying to get their children assessed and professionals are turning them away, it speaks volumes when the professionals are pushing to see your child.
My DS was diagnosed with ASD in the end so the school were right and i was wrong. I think it's because you don't want to think that there might be something wrong with your child. I had a vision of DS being the perfectly behaved bright child at school but it just wasn't to be. It took time to accept that things are now completely different.
Go for the assessment and see what happens. They might be wrong and she might be fine. If there is a problem then at least you will know what you are dealing with and get started on any therapies etc.

statementtotheedge Sat 08-Nov-14 23:39:25

If you are 'that parent' then so was I. I was in denial for a long while and think that it is a fairly normal reaction.
Essentially it is just her and whatever she may / may not be diagnosed with she will still be your same DD. Clearly you have been giving her extra support to aid her development - don't beat yourself up about it.

zzzzz Sun 09-Nov-14 00:06:23

It doesn't matter what they think of you, what others have done or any of that. It matters that your dd gets the help she needs and you get to love her and raise her as you want to.

What real input would she have got if you had been yelling about her deficits and demanding help?

You sound lively and like just the sort of mum a little girl with some extra hurdles to overcome needs. How lucky she is to have you. Enjoy her, and try not to be mean to yourself.

WrongWayUpside Sun 09-Nov-14 09:28:50

Thank you everyone, it helps.

In particular thank you zzzz for your comment about 'real input'. I have turned down support, which they seem to think is awful but it isn't really. A few months ago I realised that dd really benefits from makakton, so I've used youtube, a book, found a practice opportunity at work (I teach) and paired with another local mum who's also using it with dc. Its going great. I told the cdc and they've booked us on a beginners makaton course for after the new year. I feel we are getting ahead of this, plus we have regular social opportunities for using it rather than driving some distance to do it in a non tailored group in the middle of nap time. It could even put dd off signing as she is stubborn if pushed in the wrong way.

I'm happy with assessments, or useful input but I still have a life. I don't want to drive around for groups that I can see just don't fit dd. I want to enjoy her on my day off, I think the park and soft play did more for her physically than previous physio which was really obvious in advice. She's the youngest of four, plus we teach, I feel they give advice as if we're people who are struggling to provide for a our child. Considering the age of the previous slt we saw I'd hazard a guess that at work I've seen more salt programmes than she has. Whilst I might be in denial, I'm not stupid when it comes to moving dd on. I've I'd sat waiting for their input dd I doubt would walk or roll still, I spend 5 months with a blanket teaching her to roll daily, that seemed to surprise them that I would.

kleinzeit Sun 09-Nov-14 12:08:08

Hm, there are swings and roundabout to this. In my experience professional help is very rarely offered in the exact way I want it - it’s usually at the wrong time, in the wrong place, and not what I really wanted for DS in the first place. But it's a stepping stone. Up til now you’ve been “filling the gaps” in for your DD yourself - and very successfully by the sound of it! Maybe now is a good time to start building up her wider support network including some professional help.

So I would suggest giving the makaton course a try even if it wouldn’t be your first choice. It might be useless but it might be helpful and even if there isn't much you don't know you may meet other parents, useful professionals, make connections, hear about a different local course or therapy that sounds better, whatever. If it’s useless or counter-productive then do drop it, but don’t turn it down point blank. And it’s a lot easier to get more appropriate help later on if you can say “we tried this and it could have been better because…. Do you have anything more like….”

You sound like a great Mum by the way. A loving caring Mum who wants the best for your DD. And I'm sure the professionals can see that too! flowers

zzzzz Sun 09-Nov-14 12:43:38

My experience is similar in that I have 5 children and much of the "advice" is pretty basic childcare/teaching. I DON'T think it's a case that a badly fitting course is better than nothing. In fact i think the EXACT opposite. My child's skill set is a difficult match though. He is severely language disordered and autistic but highly motivated by people confused, he also has high IQ. Perhaps if there were more peers I would feel differently.

Ineedmorepatience Sun 09-Nov-14 15:55:10

Hi wrong and welcome to the board, I have no advice for you but just wanted to say that your Dd is still very little and you have done so much with her already.

Yes she may need assessing and she may have SN but you have not sat back and done nothing to support her, you have helped her instinctively.

You are a great mum and your Dd is lucky to have you.

Good luck whatever happens during and after the assessments flowers

Firstnamelastname Sun 09-Nov-14 18:37:34

I really don't think you have missed out on anything - echo what zzzz says about real input
What you have been doing at home more than makes up that/ sounds like it exceeds what you would have ben offered especially at such a young age

Babieseverywhere Mon 10-Nov-14 11:53:52

It is very frustrating at times. sad

I have a 2yo DD3 going through the system who I feel is far too young too label and yet professionals are positively eager to see and refer her on.

Where as my unhappy 6yo DS who masks at school gets no help and I am practically on my knees begging for help with him with the same professionals.

However a cautionary point for you. To my guilt I was offered an referal for DS when he was younger (2yo) which I didn't take up as he was board line and at the time happy. Now I am racked with guilt wondering if he would be happier at school now, if I had jumped a few hoops earlier ! Of course I will never know.

StarlightMcKenzie Mon 10-Nov-14 13:33:07

Not read the thread but in direct answer to the OP, I have learned that often parents who appear 'in denial' often get treated better, as do their children.

Professionals seem to prefer the 'outreach' model of intervention where they hold the key information and their challenge is to engage the parents. Sometimes this means the professionals fight for resources for the child.

The parents of children with difficulties who spot the difficulties as well as solutions before the professionals do are less 'rewarding' for such professionals and I don't think often they get any help any quicker, but they certainly have more of a battle.

Also, OP, you will be 'parenting' your child the way they need it. Formal diagnoses and descriptors can be helpful but ultimately they are vastly inferior on a day to day basis to the application of experience and understanding you will have developed.

lougle Mon 10-Nov-14 21:19:25

Nothing insightful to add, except that if they are right, you'll have plenty of years to support her in her needs.

StarlightMcKenzie Mon 10-Nov-14 21:38:02

Oh and OP. I have turned down lots of support. The latest being a fully funded independent special school.

Don't accept things simply because they are offered. They have to be what the child needs and a better fit than what you can provide yourself or be the best use of your child's time.

Bilberry Tue 11-Nov-14 13:12:25

I agree with the others but I've found the 'system' works very very slowly so it is often best to stay in it rather than try to access it later when if becomes apparent you need support from it. A lot of box ticking and form filling seems to need to happen before you can access the support you actually want or need. I also agree that courses, even seemingly pointless ones, can provide a helpful support group of parents who know much more about what is around locally, what is worth a try and what us a waste of time.

autumnsmum Tue 11-Nov-14 13:51:31

I have to admit I've found groups etc v useful, if only to combat idolation

WrongWayUpside Tue 11-Nov-14 16:05:24

Thank you to all the people who've said I'm a good mum, its a big pick up!

Autumn- I'm lucky that I have no isolation, I have four so many friends from previous children, including sen siblings (my dd has one friend, she loves another girl with a severe disability so I hear about services from her mum). Also my cc playgroups are good

Bilberry- it is slow, I actually mentioned a concern back in may, referred by hv in aug, panel decision last week.

Starlight- I'd agree. Another dc had health needs, I was an 'anxious mum' despite her needs being genuine and diagnosed. Now I don't want input I am chased instead of chasing!

Babies- that's what scares me, turning down input now and finding out we need it later and I'm reliant on a school that does nowt.

The weirdest thing is knowing what do say if say a form askes if dd has special needs? Does she? I end up writing 'no, but she's unsteady, has poor hearing, doesn't talk/understand, may be scared easy, can be too small for equipment and need help and has had possible seizures (please keep a eye on her)' or something for creches . Generally people just smile and say she'll catch up or tell me about their child who started running/ growing/ talking all at once at three.

CopyWoman Wed 12-Nov-14 14:22:06

I was definitely a bit in denial for a year or two. My son was in the system with speech and language and early years Senco, but it wasn't until he was in Foundation that it was suggested to me that he had ASD. There was then a strange period of time where he was part time, did have some support and I flipped in and out of denial. Once I made the decision to get his properly assessed for ASD, I felt much more in the driver's seat. It still took a long time to get diagnosis and statement after that, but I think he did benefit from his time in ms school in some ways (he is in special now).

When I look back, I wish I had been more upfront, but tbh I don't think he would have got any more than he did if I had been. I think the system were still letting him go through the process of trying and failing in ms. When he was much younger, he as a really happy boy. Things only really fell apart big time once he was in ms school, so I think my parenting of him has always been okay. I never knew him different, so I worked to his needs. As he has got older, though, I have benefitted from the parental support from his special school and the courses run by NAS etc.

The most important thing is that your child is loved and well cared for at home and that you are doing everything you can to support her. But if support is being offered, then yes do take it because it probably does mean that she needs it. I think professionals have seen it all before with parents in denial and do allow them some time to come to terms with it, but I think they could support parents more during this phase as it is a very scary time. They are probably not thinking bad of you at all, but sometimes it would be helpful to hear that. It's a long road, take it step by step.

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