SEND parenting and battling to gain support

Let’s just talk about the support our

SEND children need, and just how those who don’t have SEND children will just not understand the battles we face!!

So let’s put this into perspective!!

Mads turns 5 just before Christmas, hardly sleeps, just before 4am wake up call this morning and she was wired, vocal stimming enough to wake up the next village bouncing around and full on.

She’s still in nappies with no awareness of her body functions. Plus gut problems which means I’m constantly changing nappies and not nice ones.

Non verbal but vocal

She’s wild as in is like a tornado 🌪️ all day everyday from the moment she wakes till when she drops which can be anything until the early hours and even if it is the early hours she’s up before the birds (how she can even have this energy is beyond me I have black bin liners for eye bags)

She has no awareness of danger what so ever. Which is exhausting in its own right

She has no concentration, and her emotions and dysregulation is so up and down we have every emotion everyday and some days are tough. I use every tool and support I know and have learnt.

She eats when she wants and only certain things

So here we are in to it 👇

So mads was referred at 18 months old for speech and language and the neuro disability pathway

Last August we had one appointment the second is next week

Last year I was told you’re doing everything we would suggest end of support, So I’m looking forward to

Next week to see if anything else will be recommended seen as I’m not a qualified SALT 🤦‍♀️

Mads EHCP after battling, mediation, tribunal and way past deadline dates then weeks of drafts emails and calls and the local

LA telling me the aim is to get mads into mainstream 🤣🤣 surprise surprise mainstream and ARB both agree with me they

Can not  meet need (yea I knew that but the battle we have to show that is silly) your made to feel like your making this shit up.

Even when assessments are done and agree with what your saying.

Specialist school (which I have already stated is not suitable) might be able to

Meet need but wouldn’t have a place until the summer term

(So advise of education phycology and Specialist play therapy etc is teach mads to mimic play and behaviour)

Therefore you want to place her in a setting with other children with other needs and behaviours for her to do as taught and mimic and them to then become her traits

(My training here- programming years 0-7 years where we learn all our behaviour, learning and imprinting patterns - you know the good stuff and the shit that we have to work on in therapy years later)

She needs 1:1 support tailored to her and her needs 24:7

So yea I’ll set her up to become worse - NO

And apparently EOTAS wouldn’t be approved at her age but they are happy for

Me to educate at home until a possible place is secured

EOTAS is education other than in

A school setting so it’s ok for me

To homeschool as that suits them but not for them to help support her needs.

This is all down to them not wanting to put their hand in their pocket as fund support to improver her learning and wellbeing

But the only way to appeal is to approve something your not happy with, because you can not appeal a draft plan (how stupid)

So basically many parents have to go through daily battles, not only with supporting their child, but to get services to see and believe what they deal with daily to then have to jump through hoops and over hurdles to prove it to then be turned down to then battle again to overturn it to then continue to battle

Sounds exhausting, soul destroying and hard work doesn’t it!!!

And then……if you get DLA once you have filled out a lengthy form sent evidence you wait months to get a decision which we was lucky mad was approved by 3 years old you then have to reapply every two years and again prove and write down which let me tell you takes and emotional and mental drain on you stating and comparing your child to a child of the same age

Showing how they are not meeting each milestone or achievement. This is the same in every report you read and it’s heartbreaking to see it in black and white.

You then have to grieve this because you don’t want your child to be struggling or not living their best life due to a disability that let’s face it rules the way your whole family have adapted their lives to support your child, because no matter how much you try to make life as normal as possible for your other children your SEND child’s needs have to take priority and the whole family deal with it daily just you as the main care giver take the brunt of it.

(Yes this was written on little sleep and from a place of my perspective but I see you nodding your head going yep right there with you!!)

How can it be so hard to just get the support and understanding from services that should be their when you need them, and without having to be a detective to find them and need a phd to understand it all, and a life time of waiting for services and support.

All well trying to earn some income and have no support or time off.

For those who have children in school even with EHCPs in place get calls to pick their child up because they are “too much” or “dysregulated” and feel they can not support them….: welcome to what the parent deals with non stop who do they call for a break?

So if you need to rant, need support or realised that you need support because your loosing who you are and struggling with your wellbeing reach out this is what I do and why I do it!!!