Feel a bit lost and overwhelmed

[Ilovecrumpets]

Hi everyone

I am a single mum to two DS. My eldest DS (now 7) has always been a very intense child, huge emotions and temper, very anxious, can be quite rigid, lies. Dominates home life. He has really struggled the last two years at school with shouting out, chatting during carpet time, being competitive, defiant at times and sometimes getting up and wandering around.

I’ve always felt in my gut since he was little that there was something more to his behaviour - this increased when I had my 2nd child. I have been trying to engage the school for the last 18 months. Anyway I saw a GO and he was referred for anxiety to Ed psychologist - Ed psychologist said he has an ‘unusual neurodevelomental profile’ - clear weaknesses but also some strengths she wouldn’t expect. I engaged again with the school over this (using the Ed psych email) and they finally sent in their SENCO to observe. Following this school gone from class teacher saying ‘within the realms of age behaviour’ To SENCO saying clear issue, need to make some immediate adjustments, clearly stands out from the class etc etc.

Whilst I’m obviously glad my DS will now hopefully get the support he needs I feel a bit overwhelmed by it all and slightly in shock. Also confused as to what to do next - Ed psych hasn’t observed him in school so isnt’diagnosing’ him as such. School obviously hasn’t. I think they both think ( as do I) at least some ADHD and sensory issues and anxiety.

I should have asked at the time but was so taken aback by the change in tone from the school I didn’t really gather my thoughts sufficiently in the meeting. Also suspect I want answers no one can give - such as how much of an impact will this have on him, will things get more difficult, will the adjustments they are making truly help etc. Also should I try and get a formal assessment ( I do have private health cover) - I’ve no idea if this would help?

Ironically at home we have seen a massive improvement in his behaviour the last 6 months ( he has been having play therapy). Also at school his social interactions and ability to control his emotions seems vastly improved - he does seem to have friends, be part of a gang etc. Acaedemically when he works at his desk he is more than fine ( I suspect another reason school didn’t pick anything up).

Sorry this is so long - I just feel very alone and worried for my son. Also I’ve sort of lost a bit of faith in the school as I’ve discovered how hard you have to push and engage that I don’t want to get things wrong - as I’ve realised (belatedly) no one else will advocate for him.

Yes adjustments should help your ds in class. It should also help at home too as, depending on what they do it should reduce his anxiety generally.

It's good that the school seem to be being proactive now. The SENCO and Ed Psych wouldn't be able to diagnose your ds but the SENCO should refer you on to whoever does diagnose in your area (usually CAMHS).

It is very overwhelming at first but it sounds as if your ds is starting to get a good support network, which will hopefully help all of you.

Hi OP

You are right that you are your son’s best advocate. It’s really difficult when you don’t have a school / SENCo who will act in your child’s best interests or listen to you. After all, you know your child best and recent changes in SEN law have emphasised the importance of parental input (not that that always makes a difference in reality).

If I were you (speaking from experience), I would get your GP to refer you to your local Community / Developmental Paediatrician (these are often based in Children’s Resource Centres) as a first step as these are the people equipped to diagnose or refer you on to other professionals if necessary.

Did the EP write a report for you with recommendations for your son’s school? If he saw the EP just for anxiety and not for a full EP assessment, then I would definitely get a private EP assessment done if you can afford it. This will be able to better inform you and the school of your son’s needs and educational requirements. Also, an Occupational Therapy assessment can help identify any sensory problems. Once you feel as if you are ‘doing’ something and not leaving it up to the school, you will probably feel more in control (at least that’s what I’ve found, having dealt with my fair share of useless SENCOs!).

It can all be quite overwhelming at first. It sometimes helps to talk to other people who are going through similar things. Your local Parent Partnership should be able to help with details of any support groups.

Thank you both for your replies.

@zen1 yes you are correct he is only seeing the Ed Psych for anxiety so not an assessment. Because of the issues around school that were coming up, she did write an email for me to share with the school with suggestions ( this is the email that finally meant the school engaged thank goodness). She is very much of the approach of finding him strategies to help not labelling - but I think for discussion with the school I almost need a label.

School have suggested I request an OT referral from GP so I will also ask for a referral for a private EP assessment. I think now she is engaged the SENCO is actually meant to be pretty good ( I know there are several children who have come from out of catchment to the school specifically for the SENCO).

Thanks again for replying - in one sense it’s a relief that something I’ve always known is now being acted on ( and actually one of the changes made - basically love bombing him at school - has had an almost immediate effect), but at the same time, and I hope I don’t offend anyone, there is also a sadness that his life may be harder than others. Plus guilt that at times I just saw him as a naughty boy.

Sometimes it is more helpful to view any diagnosis not as a “label”, but as a signpost so that your child can get the right provision. I have 3 DC diagnosed with ASD and other things, and it wasn’t until they got those diagnoses, that the schools started to put things in place. It shouldn’t be the case, but sometimes it feels as if you need a diagnosis to prove a need. Even with diagnoses, specified provision and professional recommendations, I’ve still needed to give their schools a kick up the bum to deliver and unfortunately, that is the case for a lot of parents.

Just as an aside, I’ve found that private Paediatric OT reports are always a lot more detailed than those written by NHS / LA professionals. In fact the same is true for EP and Speech and Language too.

Thanks @zen1 yes I have a feeling a diagnosis will be important re the school - I think particularly as my DS can ‘mask’ quite well at the moment ( so we can have a really ‘good’ week, where he ‘behaves’ all week at school, he is able to concentrate at his own desk and can do the school work) and also because his behaviours are generally ones teachers see as ‘naughty’ or ‘defiant’ ( obviously he can be these as well ). I guess I hope a diagnosis might help them view him with some understanding?

One would hope so, Ilovecrumpets. One of my DC is a young teen and can appear rude because he is very direct and speaks his mind, and teachers still need to be reminded that it is as a result of his ASD as he has no filter. He also fidgets and fiddles a lot. I have found his reports useful to draw attention to the fact that he is like this due to his disability, not because he is trying to wind them up. He is very defiant as well!

Thanks again for replying @zen1.

Yes the defiance makes it look so deliberate.