Child with ARFID and chromosome deletion

[SueKoshal]

Hiya guys...

I've just joined this group today as I'm at my wits end..
I hv a 6 year old who was tube fed first 3 years of his life, he has chromosome deletion and has ARFID too..
He is super hyper, can't sit still, loses focus, easily distracted, his understand is not fully there he is very good at masking it and makes you think he understands it all and registers everything, but he does not.. He will repeatedly keep asking things eg if he is to have a video call with his mates he will keep asking again and again and again any there's been times when he was meant to hv call and didn't then he doesn't understand why or understand that he can't and he gets frustrated..
He has no fear understanding of danger walks off can easily be distracted..
He started walking late speech wasn't until he was 3.. (was under speech language, inclusion support, dietitian he is still under them due to his feeding disorder ARFID) he was year behind in development..
He lashes out, gets frustrated, biting his sister scratching punching, screaming, anger, one minute he is ok the next he's not..
He gets overwhelmed..
He is a very bright boy (academic wise he is great) emotional mental health I'm worried about..
School kept saying he's fine no concerns, now they're saying he refuses to do things and won't talk about it, he needs step by step things broken down, but still saying he's fine..
I'm so worried, I've been trying to get him support that he needs for past couple years..
I just don't know what to do any advice would be very very much appreciated..
Thank you 💕

You can apply for an EHCP yourself. IPSEA have a model letter you can on their website.

What are school doing to support DS?

Hiya...
Thank you for replying to me💕
I asked school about the EHCP they said my little boy does not meet the requirements no where near..

They're not doing anything at all..
I know my little boy and know 100% he needs the support..
xx

Whoever told you your child "does not meet the requirements" is talking complete bollocks. The legal test is :

• whether the child or young person has or may have special educational needs (“SEN”); and
• whether they may need special educational provision to be made through an EHC plan.

This test is set out in the law (section 36(8) of the Children and Families Act 2014).

Any other criteria, like school having to pay £6000, or your child being so many years behind, are unlawful.

It is clear from your post that your child has SEN, and the school is evidently not meeting his needs at the moment, so he needs to be assessed to see what support is required, and whether this needs to be provided through an EHCP.

Use the model letter here:

www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

And don't be fobbed off. If they refuse, appeal. The vast majority of parents win Refusal to Assess appeals.

Thank you hun, school are saying he doesn't meet the requirements (as one criteria he has to meet is on the verge of being expelled)
They said they wouldn't even look at it, as my son is progressing (academically)
I have no concerns from the academic side he's bright, it's the rest of it..
And his chromosome deletion states what can cause etc..
But no one has taken into account the diagnosis for his feeding disorder or the diagnose of chromosome deletion..
I'm so frustrated and stressed out and feel guilty for not being able to get the support he really does need..

Thank you again 💕xx

Being on the verge of being expelled is not a lawful criteria for refusing an EHCNA either .

If he can't sit still, loses focus, is easily distracted, and doesn't understand everything

You apply to the LA, not the school. The model letter here sets out what the lawful criteria is and makes the point that using any other criteria is unlawful.

www.ipsea.org.uk/making-a-request-for-an-ehc-needs-assessment

As Ellie has posted, the only criteria for an EHCNA are a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Any other criteria, including needing to be on the verge of permanent exclusion, are unlawful.

Academic progression isn't the only progress that needs to be considered - there is social and emotional development. You can have an EHCP and be academically able.

You don't need the school to apply, you can apply yourself now.

School haven't given him any support yet, would they need to do that before EHCP..
Yes he loses focus, very very hyper, frustrated lashes out he doesn't realise what he's done.. He is very good at masking it..

He needs to know what's happening during the day, if we go out he wants to know step by step where we're going and what we are doing too..

All I want is the right support for my little boy who is very loving.. xx

Why aren’t school giving him support?

Academic ability isn’t the only criteria for an EHCP. Ds is academically able but has had an ehcp since year 2. I would look at applying yourself

Is he under a paediatrician? I would be asking them to explore if there are any other things behind his behaviours. Could be also be autistic and/or have ADHD?

They said they think he is fine not worried they don't see anything.. which they've said from reception then he started having few issues and now in year one and showing more at school..
They said he is progressing and ahead in some lessons.. which is right, anybody could progress academically and still struggle right?
He shows signs every single day..
Yes he is under a paediatrician has been since he was 2months old..
He said I suggest you speak to Senco at school and about EHCP so I did..
They said there's no concerns (senco is the vice principle too who said don't meet criteria)

xxx

Whilst it is easier if the school have already tried to support DC and put provision in place it is possible to get an EHCNA when they school could do more but won't. See case law here.

Just apply yourself. No one is going to advocate for your child like you can.

Thank you.. No support has been given up to this date..
I hv a meeting with school today.. then il know more about if they will or will not put support in place..
Would ARFID and u chromosome deletion come under 'medical conditions'
School hvnt taken in to account that my little boy has this..

Thank you xxx

ARFID and chromosome deletion are medical conditions but because they are affecting DS' education they are also SEN.

School are sort of saying he is not SEN and I'm saying he is..
His medical conditions state what impact it has on him..
I said he needs support so I need it out in place for him as he's diagnosis clearly states what will have impact on him development delay, speech language, string links to autism/adhd/ocd/anxiety
There's more too and I've told the school today that u need to take in that there are 2 medical conditions which are his diagnosis therefore u need to act on it and offer support for him just because he is good at maths reading etc hates writing, refuses p.e sometimes and saying he is progressing does not mean there's nothing going on and he is fine, because there clearly is something going on and it's beginning to show more now.. But no to EHCP and said even if I applied they would not assess because they would want to know why applied if he's progressing and school would hv to prove they've done things to support etc...

Honestly, just apply for an EHCP. Ignore the school putting you off.

DS has SEN and is not making progress across the board.

Thank you for your help and advice 🥰
It's just so frustrating as for the past couple years I been trying to get school to acknowledge his ARFID and Chromosome deletion and they still don't know anything about it or had meeting with me about it so how can they say he is supported without knowing what he's been through and going through they just see a happy little boy and say all is fine..
Surely the school should need to know what he has been diagnosed with and that will hv impact on him too..
I asked today if they know anything about it and they said no just the diagnosis you hv mentioned
Since starting school in 2019 he hasn't been seen by school nurses once.. Should he not be seen by them or am I just getting carried away?
I thought school nurses would intervene with a child who has ATFID and chromosome deletion and definitely school should know and how to support am I right or wrong?? xx edited by MNHQ - identifying

I wouldn't expect the school nurse to have seen DS. State mainstream schools don't have a nurse on site and DS is under a paed. I would expect the school nurse to be involved in implementing an individual health care plan (not the same as an EHCP) if DS needs one. But, even then they won't necessarily see DS and medical team may have more of an input.

Have you provided school with any information on his medical conditions? Have you been in touch with Unique?

Support should be needs based rather than dependent on a diagnosis so I wouldn't be too concerned there.

If you report your post MNHQ will delete DS' name.

Stop focusing so much on the diagnosis and focus on him. List the areas you feel he needs support with in school, the issues he faces and what you think may help him further.

Hiya...
School seem to not want to know what DS has or impact has on him they just say yes we're aware it's on his records..
Even yesterday I said to them what impact it has.. and to me I felt like I was just talking to myself.. What is unique?
School did assessment yesterday early year one I said DS needs 1-2-1 support, so they said we don't know yet if will get it or not but they've done an assessment and now I just hv to wait..
Quite a lot of the questions were like where we live, do we hv routine, my childhood how it was, some didn't even seem relevant..

Feels like I'm going around in circles to be honest.. but I will keep fighting just hurts when you know your child needs support but everyone keeps brushing it off..

The school is independent school

Independent schools are often unsupportive of SEN, and when they are they charge parents for the support.

Unique is a charity that supports parents with chromosome abnormalities.

Ah I see you are in an independent school.

You will probably find that support is generally better in state schools.

Thank you this did cross my mind, because of being independent, that's why getting fobbed off!!
Which is really wrong because end of the day, if a child's needs support, they should give it, as it's a child's education/life..

Schools said something about £12000 for a EHCP not that they're going to do the EHCP, its because they said child does not meet criteria no where near🤔

I would just ignore all the crap this school is telling you and apply for the EHC Needs assessment yourself.

You make the application to your local authority (LA). The LA decides whether or not to carry out an EHCNA. They should let you know whether they are going to or not within 6 weeks of your application. If they decide not to, you have right of appeal to the SEND Tribunal. The majority of this type of appeals are won by parents.

If the LA decides to carry out an EHCNA, they must seek advice from a range of people listed in SEND Regulation 6(1)

www.ipsea.org.uk/what-happens-in-an-ehc-needs-assessment

You can ask the LA to seek advice from anyone within education, health or social care, as long as it is a reasonable request, eg OT, SLT, CAHMS or any other professionals involved with your child.

The LA then decides whether or not to issue an EHC Plan. Again, if they refuse, you have the right to appeal.

If the LA decides to issue an EHC Plan , it is the LA, not the school, that is legally responsible for securing the provision in the plan, and the funding for the plan is the LA's responsibility.

Unfortunately, EHC Plans vary in quality from the rigorous and robustly detailed and specified which perfectly match a child's needs, and the woolly wishy washy ones that are completely unfit for purpose, but those concerns are for much further down the line.

For now, in your shoes, I would be applying for an EHCNA myself, and quite frankly, I would also be looking at other, more suitable and supportive schools, whether they are mainstream, special or independent. The one your child is in at the moment (and you are actually paying for ) sounds spectacularly useless.

Would the school need to have offered support and tried things before I apply or can I just apply as no support is offered..

💕💕

Just apply for an EHCP. As I said previously it is easier if the school have supported DS, but it is possible to get a needs assessment if he school could do more, but won't. See the case law I linked to in my pp.

Thank you so much 🥰💕xx