Don't know where to turn

[burntoutmum]

Hi

I’m feeling totally overwhelmed with DS2 - nearly 9- at the moment. I’ll try and give a brief background..

He had a brain tumour diagnosed in 2015. Chemotherapy started a year later. Obviously this was very stressful and DS had support through ELSA at school and a clinical psychologist at hospital. Chemo ended earlier on this year and he’s recently finished another group of sessions with the psychologist and he’s on long term ELSA.

He’s also seen by a VI specialist teacher as he is visually impaired as a result of his tumour.

We know he’s high risk at needing chemo again, which he worries about a lot.

Just before the summer holidays he was put on the waiting list for an Educational psychology assessment- we have about another 9-12 months to wait for that. The psychologist gave us “Conners” forms to complete, I later asked if they highlighted anything and was told that if they went on the form alone then he would hit the criteria for inattentive ADHD . However that is in question as we know some of the questions could show that but also the side effects of chemo can cause forgetfulness etc too. I wouldn’t be surprised if he gets diagnosed with something though.

Additional to this, in June, DS was diagnosed with Tourette’s after nearly 3 years of tics.

School are frustrated and worried. He doesn’t hit the threshold for an ECHP Vision wise, so they’re holding out for a diagnosis next year. They are doing a great job at helping him to just about keep a float academically, but worry about him moving to secondary without definite support.

In the mean time, DS is an anxious wreck . He’s been chewing his bed at night, doesn’t sleep properly (11pm before asleep), chews everything in his sight at school - school have suggested him having a chew toy?- he’s very anxious about separation, panics about parties, wants us nearby all the time. I’m meeting the psychologist this week to discuss this.

I just feel totally overwhelmed TBH. We hoped for a break once chemo ended but it’s been never ending instead.

I don’t know the point of my post really, I just wondered if anyone else is in a similar position

X

The tumour was discovered in 2014 not 2015!

I don't really have any advice but wanted to let you know you aren't alone.

Ds was admitted to hospital NYE with constipation. Three days later on 3rd January they found a brain tumour and two days after that he had a six hour op to remove it. Subsequent testing showed it to be a high risk grade 4 medulloblastoma with cancer cells in his CSF. He then had his stem cells collected, 31 sessions of high dose radiotherapy and four cycles of high dose chemo with stem cells given back after each cycle. We found out in October that he is in remission ☺

Ds was 9 at diagnosis and turned 10 in August. Surgery left him with left sided weakness, he is unsteady on his feet and can't walk far so uses a wheelchair when out and about. He is relearning to write with his right hand as he was a leftie. Chemo has left him with high frequency hearing loss and we are awaiting a decision on whether he needs a hearing aid. Chemo has also given him foot drop so we have an upcoming orthotics appointment. His eyes are good at the moment.

We were advised to apply for EHCP but when the application went to panel for a decision it was decided we need to go straight for statement application which is what we are in the process of doing now. They also approved a 1:1 for him in the meantime but this isn't really needed at the moment as he is only in school for two hours in the afternoon at present.

Ds has always had behavioural issues even before diagnosis but this seems to have escalated and while having his treatment was seen by child psychologist who wrote to GP to support a referral to paediatricians for an assessment which we are also waiting for.

We have been warned that his treatment will highly likely cause problems in the future with growth, development, memory, he will lose around 12 IQ points, will struggle to write, possible cataracts...... the list goes on.

Anyway, I've not really given any advice but sometimes it's helpful to know you're not alone and to hear others experiences

Also to add, it's very hard to statement a child once in high school and can take up to six months to complete the process which is why we've been advised to apply now as my ds is also going up to high school in September x

I'm sorry to hear everything your family is going through. In respect of support, my son had a stroke and I was told by lots of people how "unlikely" it would be for him to get a statement (this was about five years ago) I applied to the LA myself but o do admit to paying for a private ed psyc report before I did, which is what prompted me. There was a bit of haggling about and it wasn't an easy experience as they don't give them out without a wrangle but we got one. We then got a specialist school named so part of his care plan has specialist input such as OT, speech therapy etc.
Perhaps your first move might be to seek help from a group such as SENDIS to support you in an application and do have a look on the IPSEA website for advice too. People will always try and put you off applying and you obviously have so much to deal with anyway so please do try and find someone to help support you, bit do apply!!

Hi, how much was the private ed psych assessment, if you don’t mind me asking?

It depends on the depth of the assessment and they can discuss that with you first but realistically between £300-£700! We spent about £500 on initial in depth assessment and whilst it was a lot, in our case it was money well spent. It did mean we had more evidence to start with and triggered the EHCP process

I'd seriously question that suggestion that he doesn't meet the criteria for an EHCP. At the very least, he is likely to meet the criteria for an EHC needs assessment, as these are: that he has or may have SEN, and he may need special educational provision via an EHCP. You don't need an Ed Psych assessment before applying. There's information on how to do so here - www.ipsea.org.uk/what-you-need-to-know/ehc-needs-assessments/asking-for-an-ehc-needs-assessment