Multiple ND comorbidities / adhd meds

[Mybatteryislowgottago]

Hi,

DC7 has been diagnosed with autism, adhd, dyspraxia, dyslexia.

Intellectual ability of 5yo, but this may not be accurate as the adhd was so severe (apparently) that the tests weren’t able to be fully completed.

We have known of the autism for a while and are about to begin the process of getting 1:1 support in school with this further information.

I need some guidance.

Where do I begin to parent a child like mine? What do I need in my arsenal to be able to give DC the best quality of life?

Do you have any experiences to relate re. Children with multiple neurodevelopmental disorders?

Any experiences with adhd meds?

I think I’m looking for my tribe tbh!! This feels very unfamiliar territory.

One of the best things to do is learn everything you can about the system. Sadly, DC whose parents know the system and can advocate for them get better support. It shouldn’t be like that, but it isn’t going to change any time soon.

So, if an EHCNA is being requested learn everything you can about the EHCP process. IPSEA and SOSSEN’s websites are good places to start, as is the SENCOP. On their website IPSEA has a model letter you can use to request an EHCNA.

@OvertakenByLego

Sorry we are NI so I believe it is a different process here. And yes I’m going to have to learn fast!

Your username made me laugh; my house also!!

Does anyone have any experience with meds?

It is a Statement of SEN in NI. SENAC is a good place to start for information.

There is a long-running thread on meds, I believe this is the second of them. It might be useful:

https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others

Hi @Mybatteryislowgottago

I have no experience with adhd but I am currently going through the statementing process for my DD5. She is in P1 in NI and last June I approached her paed with concerns that I think she has autism (her nursery teacher also raised concerns of a potential developmental delay). She has been referred for the ADOS assessment but as she fits the criteria and displays many typical traits of autism her paed has said a diagnosis is the most likely outcome.

After this appointment I applied for a statutory assessment myself via the EANI website. They emailed me just under 6 weeks later confirming the the statutory assessment would go ahead. After this they contacted DD’s paed, speech therapist, nursery school and myself for advice/reports. They arranged for an educational psychologist to do a classroom assessment on her at the beginning of September as part of her S.A.
The EP picked up on all of my concerns and then some, she said DD’s cognitive assessment scores would indicate that she has a moderate learning disability and that she has a developmental age of less than 3 which at the age of 5 is quite significant. This is in addition to the autism (she scored severe in all 5 sections of the SRS-2 indicating a clinical diagnosis of autism). She said that DD requires a significant amount of support in school and adaptations are needed to allow her to access the curriculum, however she did say she needs careful observation to monitor her ability to cope in mainstream education and we may find that we need to move her to small group specialist education if she cannot cope.

Does your DS attend mainstream education? How is his ability compared to his peers, is he struggling with school? Has he ever seen an educational psychologist?

@openupmyeagereyes

Thank you this is really helpful!

Thank you, yes DS is in mainstream and is struggling/distressed. Can’t complete work and quite behind.

We have been going back and forth with senco since p1 and it’s all been along the lines that we need to try out this that and the other before applying for a statement.

They said to me to apply for one myself last Jan, but I had some health issues myself, then they said even at that it could be over a year to see an Ed psych.

We then went on the waiting list privately to see an Ed psych and he’s just been seen. So we are going to submit the report with all the other info, IEPs, assessments and so forth.

What I’ve found is that until there is a diagnosis - and a diagnosis accepted by the nhs at that there doesn’t appear to be a lot of movement!!

DS is also quite good, no violence or majorly problematic behaviour and I fear the school/EA have prioritised other children with lesser needs but more problematic behaviour over him to be seen by Ed psych.

I am loathe to go anywhere near a special school as he is higher end of functioning. And I’ve seen other friends kids with mild learning disability/neurodiversity massively deteriorate upon entry as they are lumped in with kids that have severe physical difficulties and so forth.

@Thatsnotevenmyusername
sorry forgot to tag you in the reply above.

Thank you for sharing your experiences has given me some hope the process could be more straightforward than feared.

I’m utterly zapped with all the hoop jumping.

Honestly the process has been really straightforward for us so far. I had read horror stories regarding the statementing process and was prepared for a huge fight on my hands to get her some support. So far everything has been smooth sailing and all professionals are in agreement that my daughter needs significant support in school even with no diagnosis yet (although all things indicate she certainly will be diagnosed after her ADOS assessment.)

I rang the EA 1.5 weeks ago to check on the progress of DD statement as all the advices had been submitted and they said I would receive my proposed statement within the next couple of weeks so I anxiously await it now but so far we have hit no bumps in the road.

I have no experience of special schools and the thought of moving DD to one is daunting, however we just want to do what is in her best interest. She will be statemented and receive additional help in school and work from an adapted curriculum with visual aids and choice boards etc to aid in her learning, but if we get to the stage when she is struggling and unable to cope in mainstream (which is a very real possibility as the gap between her developmental age and actual age is likely to continue to widen) and it is in her best interests then we will look into specialist ed however I just want to give her a chance at mainstream education first.

I think in your case your next action needs to be applying for a statutory assessment asap. it is a long process - 26 weeks. The EA have timescales they must adhere to and so he will see an EA educational psychologist as part of his statutory assessment in the classroom irrespective of waiting times. We applied mid-June and are now at the proposed statement stage.

It’s a long, drawn out process but you are your child’s best advocate and if he is struggling in school he needs additional support put in place and the only way to do that with schools budgets here is through statementing.

Good luck, it is exhausting and worrying but it is what we must do to get our children the help in school they need and will hopefully pay off for them in the end 🤞🏻

Thank you @Thatsnotevenmyusername

In terms of parenting, has anyone got advice for managing a child with complex needs. I am finding I am absolutely exhausted day to day.

What are the hacks, good website information that kind of thing. I haven’t time for books at the moment. But just anything straightforward I can follow to manage him a bit easier.

Am following the other thread for meds.