To feel absolutely exhausted (SEN related)

(10 Posts)
CountryMummy1 Tue 19-May-15 22:58:40

Some of you may remember my other threads when I was at my wits end trying to get to the bottom of what was the matter with my 3 year old DD. I felt fobbed off as a neurotic mother even when she started with sleep apnea and going blue in the night. Eventually we saw a fanastic consultant (after paying a fortune on Harley Street) who diagnosed her after playing with her for 10 minutes and she had an adenoidtonsilectomy and grommets inserted the next week. She is like a different child - happier, talking more etc.

However, she still has a speech problem. She was saying nothing at 2 and, even though I self referred her just before her 2nd birthday she has only been seen every 4-5 months. She can say whole sentences now but her pronunciation is very poor and difficult for strangers to understand. I do so much with her as I have always felt that her speech is disordered rather than delayed. I purchased the Nuffield speech program for £500 as I felt this is what she should be following. I sit up for hours at night trying to learn it so I can teach DD the next day. I have a masters in Early years education but my knowledge of speech specifically is fairly limited.

After many letters and phonecalls etc. I finally got her referred to the Nuffield in London. We trekked the 3 hours there and had to stay for 3 days. They confirmed she has a speech disorder and needs weekly therapy. They also said that if I hadn't done as much as I had done with her then she wouldn't have made such good progress.

We are in the middle of applying for an ECH plan. We were turned down for assessment originally so that was another battle. Now they are in the process of assessing her.

I am exhausted. I got back from London 2 hours ago after 3 days down there on my own withstand 3YO and a 14 month old. Tomorrow we have the child psychologist coming round then she has a speech assessment in the afternoon. Thursday she has a place on a 4 week speech program (again after a battle). Friday we are supposed to be going to the seaside for a week so that's another pack to be done.

I can't see the light at the end of this tunnel. My baby is neglected as he is always being dragged to appointments. We are massively in debt after paying for consultations and private speech therapy. I can't get DD settled in nursery as she gets very upset when she can't be understood - this is what prompted me to go down the ECH plan route even though I was told I don't stand a cat in hells chance.

I just feel that we have been let down by the system all the way along and every small achievement is such a battle. I shall be up
Until 2/3am unpacking and form filling before getting up at 6 to start all over again. I'm waiting for the next kick in the teeth- probably the ed psych tomorrow telling me I have royally messed DD up in some way.

I just want to go somewhere where I can rest.

3littlefrogs Tue 19-May-15 23:05:08

Do you have a husband or partner to help?

Could you copy your post and email it to your MP?

Sadly your story is depressingly familiar. I think YANBU but you will get more support and advice on the special needs boards.

I hope things improve for you.

flowers

CountryMummy1 Tue 19-May-15 23:07:02

I have a DH but he works longs hours to put a roof over our heads so the majority of this falls on me.

flowersthatbloominthespring Tue 19-May-15 23:15:52

Wow, countrymummy.

First of all, take a big breath.

Then give yourself credit for all you have done/are doing. And have some cake

Firstly, I think you're amazing, and what you have done and are doing is amazing, and you clearly see for yourself how it's supporting your child - the professionals are telling you this.

Here's the harsh bit. (sorry!). Whilst I think what you've done is amazing, and undoubtably helped and supported your DD, and it's also DEF true that parents of SEN children describe getting appropriate support for their DC as a battle, and it certianly is.
(gulp). I think you're rushing a bit.

If you had done NOTHING, it would have eventually have been picked up, and you would have got this on the state, perhaps not as gold-plated.

She is only 3.

She is VERY young to get an EHCP.

I hope you get the R&R you need by the seaside, and I'm sorry it's so hard.

CountryMummy1 Tue 19-May-15 23:24:11

I can completely understand what you're saying Flowers and hopefully she would have been picked up as having SEN at some point. However, having been a teacher and seeing children not getting support until they are 7, having long lost all confidence and developed a hatred of school, I just couldn't stand by and watch DD struggle, falling even further behind her peers.

The system is a complete nightmare, even for someone who has spent their life in the education system. Lord knows how people with any sort of difficulty cope sad

Icimoi Tue 19-May-15 23:25:14

You're quite right, it is just wrong that you should have this sort of battle - particularly given the massive emphasis in the new Code of Practice on the importance of identifying learning difficulties early and providing for them properly. But massive credit to you for having got this far, your children are really lucky to have you for a mum.

ouryve Tue 19-May-15 23:27:59

[flower]

Now to bed. Now.<stern look>

ouryve Tue 19-May-15 23:28:16

flowers!!!

Fatmomma99 Tue 19-May-15 23:28:22

Where I live there's something called "parent partnership". It seems to run through the local authority, but also be independent to it. It supports parents who have children with SEN. Know their way around the system and give you support when you need it kind of thing.

Worth googling to see if there's anything like that in your area?

Good luck. You sound exhausted!

ouryve Tue 19-May-15 23:30:04

Parent Partnership is SENDIASS, in many areas, now. Great, or chocolate teapot, depending on where you live.

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