EP 40: Private Assessments for ADHD and Autism
 Dr Olivia KesselHost00:06

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. We are celebrating the 40th episode of the Send Parenting Podcast with over 6,000 downloads. I remember getting really excited when there were 100 downloads. I can't begin to tell you how excited I am with 6,000. More importantly, though, has been the feedback from you listeners and the value you have gained from all our wonderful guests on the show. I've been listening, learning and being inspired by them right alongside you.

01:19

Today I've invited back Catherine, who shared with us in episode five her journey with her daughter and autism and ADHD. We are both going to jointly discuss our journeys from diagnosis through private assessments. We will pick apart the process, the rationale, cost value and limitations of a private assessment, if you've been wondering if a private assessment is the right path for you and your child. This is the podcast to empower you with the information you need so that you can make an informed decision. Welcome back, catherine, to the Send Parenting Podcast. It is fantastic to have you back on the show.

02:01

I am so looking forward to having a real open and frank discussion about private assessments and what makes a parent go down that route, what's the value of it, what the pitfalls are. Both of us have a lot of experience in this with our different children and our journeys. I think ultimately, both you and I, if we could have gone the route of the GP and I think you did actually, and you'll share that story in a little bit and if CAMHS was working, that's the route most parents would take. But because that system is inherently broken right now, more and more parents are thinking is having a private assessment the right thing for me and my child right now? You've shared with me before, and you shared also on episode five, about your journey with Coco and your journey with CAMHS. Could you share it today in terms of what was involved and why it then led you to a private assessment?

Catherine AithalCo-host02:52

Well, thanks so much for having me back. I did cover it more broadly in the last podcast but I think today we'll get more into the nitty-gritty of it. There were first issues identified at Coco's school when she was five. When she started school they suggested that she went for an occupational therapy assessment. We paid privately for that. That was about £1,000. That assessment she was diagnosed with dysfraxia but nothing else.

03:22

Then about a year went on and I had suspicions that there might be some other things going on. I did some research and felt that quite strongly that I thought she might have ADHD. At that point I went along to the GP and I said I'd really like to have a diagnosis. I think my daughter has ADHD. At the GP he was excellent. He asked me a series of questions. She ticked most of the boxes. He then referred me to CAMHS. Lots and lots of things happened between that and me getting the actual diagnosis but, as we'll discuss in this podcast, I ended up going privately. We never made it to the top of the CAMHS waiting list. I pulled out around three and a half years when we went for the private assessment.

Dr Olivia KesselHost04:15

If you think about three and a half years in a child's life, it's just so much happens in that time period. I have to say, my experience of why I went down the private assessment route was hearing from other parents about how difficult it was to actually get to the end of the CAMHS waiting list and then go privately. I know from my experience with going privately. There's then the question of who do you go to if you want to get a private assessment. There's been a lot of media recently. There's been some exposés on the TV about adults actually going to get assessments and having fraudulent assessments done and Harley Street and stuff like that.

04:59

I was very apprehensive but also realizing I couldn't go down the CAMHS route. I ended up getting in touch with my educational psychologist, who I really valued her opinion, and asked her who would you recommend to me as a really reputable center for diagnosis? She recommended two, which then I was able to interview and then pick the one that I felt was best and that I felt was going to do a thorough job in terms of they assessed Alexandra, they assessed me, they assessed the school. They did numerous questionnaires both with the school and myself and with Alexandra. What was super interesting is all of those kind of aligned we didn't talk to each other and all of the results were the same. That was kind of my journey to the private assessment. How did you find your private assessor for cocoa, because I imagine at that point you did the school recommend it how did you find the person that you had to assess cocoa?

Catherine AithalCo-host05:56

I agree, Olivia. This is an absolute minefield and I've had such varied experience with this.

06:02

I'll just try and touch on that for everybody's sake. The occupational therapist that we were first referred to was through the school and I would definitely not recommend that practice or person. It was not a thorough assessment and obviously since then I've had two more additional occupational therapy assessments as part of getting into cocoa, into the unicorn, and those were both a world apart from the one that I initially had. We also at that first school, were referred to an educational psychologist. I spent another £1,000 on that report and she basically wrote down everything that I told her and then charged me for it Again. Now, having seen a proper educational psychologist and had that person involved in the tribunal that we went through to get cocoa into the school, I now know the difference between a really good and a really poor ed site report.

07:04

I've had that experience too, and actually more recently we've gone down the route of having an assessment for my son and I was recommended in educational psychologists through his school, who turned out to be another absolute duff. It is really, really imperative that you get some good advice on this. It sounds like you went through quite a thorough process, olivia, with your interviewing them and checking, but the one we had recently for my son. She didn't speak to his teachers, she didn't interview us. I had to push her to talk to us. We could talk to us about our concerns, whereas the educational psychologist that we used for Coco's tribunal he was recommended through our solicitor was absolutely incredible, and he actually then revealed some further issues and an additional diagnosis that had been missed by all of the other assessments that we'd had.

Dr Olivia KesselHost08:03

It's a minefield really. It really is a minefield. I had to say, even with my interviewing them and getting references, when I saw that program on the TV I was like, oh no, are they good, are they not good? They're in Harley Street. Then I emailed them actually and I said I want to make sure that this is the right thing. This is a lot of money. It's a lot of money. It was 1800 pounds for the assessment and I said are you actually doing a good enough job? Their response was what really made me feel better. They said Dr Kessel, if you're not happy with what's going on, we will refund you the money minus what we've done to date. We're reputable and they were able to allay my fears and they weren't in it for the money. It was the feeling that I really got from them. But it's really important, I think as a parent, as you've said, it's a lot of money and you put your trust in the professionals and sometimes you can't because it is a private assessment. Who's governing these individuals? I don't know.

Catherine AithalCo-host09:00

Also, as a layperson and somebody very new to the neurodiverse world, I didn't know what I was talking about, I didn't know what I was evaluating, I didn't understand what to look for, what to question, what they could cover, etc. So it's really important Now I feel like I've got quite a good support group. I'm on quite a few different WhatsApp groups now. There's a Henry Autism Support Group, there's the school, obviously the parents on that school group, and I feel now that I can get some proper word-of-mouth advice and support from the people on those groups.

09:35

But I still then made the mistake more recently with my son. So you do have to be really, really careful. I think I've spent about £10,000 all together on assessments. It might even be a little bit more than that, because we had all of the assessments done and then, in order to have the assessments that we needed for the tribunal to get Coco into the unicorn, we then had to have a series of further assessments and they were around £2,000 each. We had speech and language, occupational therapy, educational psychologist. So, yeah, we had all of those assessments done as well.

Dr Olivia KesselHost10:14

Yeah, and it's an eye-watering amount of money, absolutely eye-watering amount of money. And what's interesting also from my perspective is no-transcript. I was at kind of my wits end with my daughter. I didn't know where to go. I was really in a crisis kind of what is this behavior? Suspected ADHD didn't.

10:34

As a doctor and probably this is part of my DNA I needed the diagnosis to actually be able to proceed myself, even in the way I was thinking. For me that was important. And then when I did get that diagnosis and it confirmed what I knew in my gut, I thought, okay, well, now the cost ends here, but actually it doesn't. So it wasn't clear. Like the assessment package, which included an assessment by the doctor, all of those questionnaires to everyone and feedback, another meeting explaining all those findings and then a meeting with a prescriber as well to discuss the medication options as well, there's still additional costs.

11:14

So if your child goes on to medication with ADHD and you have any type of cardiovascular which is heart history within your family, you need to get them checked out, which was just basically an ECG, but that costs 200 pounds and then another 150 pounds for them to read it. I was like I could have given her one, but not that they would have accepted that. And then you get the medication and actually we've had an amazing response with her with the medication, alongside getting her an ADHD coach. But you need to repeat prescription if it's going well and oftentimes it doesn't and you need to change that prescription. Well, that's another 350 pounds for a 30 minute session to then decide what's working or not working with the medication and then to get another prescription, and then every prescription you need after that is 50 or 100 pounds and I know the numbers differ depending on what center you're in.

Catherine AithalCo-host12:05

But are you able to? Are you able to go from now? You've had the private assessment and she's on the medication. Are you then able to go back into the your normal GP and access medication through there now?

Dr Olivia KesselHost12:17

Yes, so that's what we've organized, but luckily she's had a really good response to the medication and she's doing well. That often isn't the case, so you might need to dose adjust, you might need to try different formulations. I've been lucky, it's working, so we're just sticking with it and he's now doing, and I've called my GP. They're willing to share care, so the script will now go to the GP, they will do the repeat prescriptions and then I will go back to the psychiatrists when and if needed, but with people who haven't had such an easy route. You're looking at 340, a discussion.

Catherine AithalCo-host12:54

Wow. I mean, it's like solicitors fees, isn't it? I mean, we, I'm, I'm, we aren't. We haven't gone down the medication route with Coco with her ADHD. We consulted with the school and they said that they didn't think that she would benefit from it at this point. So we're just going to keep monitoring the situation. So I haven't had experience of that and having to prescribe medication and that charge that costing more. I mean, how do you access all of this kind of help and support if you haven't got the funds to be able to back you up? This is why this is why it's so important that we raise these issues and raise awareness of the issue around camps, because I know so many parents that are struggling in the system to try and get the help and support they need All the while the kids are at home, not even going to school. The school a lot of the mainstream schools say they can't meet need and they're just falling through the cracks. It's just such a tragedy.

Dr Olivia KesselHost13:50

No, and it you know. I spoke to one mother whose daughter has ADHD. She's a teenager at secondary school. She's tried to commit suicide. She's been in a unit post trying to commit suicide and she did not move anywhere further up the camps list to be assessed. So it's you know, and it just breaks your heart because these kids are crying out for help. The parents are crying out for help. I know that I've signed petitions with Parliament as well to try and get a spotlight on this situation because, honestly, it's, it's not affordable for most people. Yeah, it's not affordable for me. If I'm honest, you know what I mean. Like it's wiped out a couple months of living. I'm a, I'm a self-employed individual who saves money to have a little bit ahead so that you know you don't get behind on bills. It's, it's wiped out those savings, but Some people don't even have that luxury.

Catherine AithalCo-host14:43

I Think there's been some recent reports in the press as well that they're starting to further cut provision around special educational needs as well. So I Don't, I don't understand where these decisions are coming from. It is Incredibly difficult for children who are not, who don't suit the usual school system and we're not. I mean, we're not talking here in our examples. We're not talking here about children who need a huge amount of additional Support. Not, there's no physical Well, they're, there, are, you know there aren't major physical needs there's. You know they can, they can get on fairly well in their everyday lives. But it's around the education system. That's the. That's the thing I mean. If you think about.

15:32

You were asking me earlier about assessments, I Didn't necessarily feel that I needed a diagnosis for Coco. So I know you said that it's in your DNA and you kind of really wanted I, to be honest, I kind of thought, well, I've, I've read all the literature, I've read all the research, I'm sure. I'm like, I'm 100% sure she has ADHD. I can read up about that myself, I can learn all about that myself. I don't really necessarily need to go down the route of getting an assessment, however, in order to be able to get the help that you need in schools and In my case I needed to get Coco into the unicorn and those assessments are taken into account on their EHCPs. And If you don't have the right assessments on their EHCPs then you don't get the school named, you don't get the child the support that they need or, for example, you might not get the funding for the school. I know, I know a lady recently who's battled and battled and battled through the EHC process and bloody hell good on her because she's Fought so hard to get extra funding for her son in school. It's finally just come through. She's done that all herself, without you know, without having the knowledge and the experience of this system. She's just kept on battling, but she needed the diagnosis again To help her son in the school.

16:45

I know other parents who kids are actually getting on okay at school. They know there are issues, suspected autism, for example, suspected ADHD. It presents very differently in girls, for example, but they can cope in school and so the parents are just offering some additional scaffolding in the background. And again I would say, for example, with Coco's diagnosis of dyspraxia, where we saw, we saw an occupational therapist every week for about a year and each session was 75 pounds. When I asked the occupational therapist to break down for me what was happening in the session because I was getting to the point where I just couldn't keep reporting all of this additional cost for her I asked her to break down what she was doing in all of the sessions and it was stuff that I could do at home with her.

17:34

Now I work full-time. I've got two other children. It's not easy, but a lot of it was physical activity and those things we can do in the evenings, at the park at the weekends. So I just made a conscious effort to add all of those things into our kind of family playtime and our family leisure time. Things like core strength work, climbing, swimming, lots of exercise at the weekends, that sort of thing. So there are things that you can build in at home.

18:04

The question you suppose you have to ask yourself is whether you need the assessment or whether it's Something that you could potentially work around yourself.

18:14

Then, in addition to that, I think there's also a number of families where there isn't consensus on getting an assessment. So one parent feels it feels very strongly that it's important to get that assessment and Oftentimes another parent feels like it's labelling and they don't want the child labeled for the rest of their life with a Term that may not be that favorable. Now I'm seeing some Progress in this area because I think a lot of it. We're moving from labels to diagnosis, which I think is really good, and I think we're moving from those diagnosis being a negative to being actually Viewed in lots of ways as being quite positive, though I have had situations with adults with special educational needs or newer diversity in workplace environments revealing those special educational needs or those diagnosis and Then having those thrown back at them on other occasions later down the line. So I think it's very, very challenging this whole area as to whether you do decide or not to decide whether to get an assessment.

Dr Olivia KesselHost19:26

It is a minefield. It is a. It's an emotional Minefield and there there's no right or wrong answer. And what's interesting is you know you mentioned how that you were able to so many things at home with occupational therapy. There's also so many things that you can do in the school.

19:40

Like you knew what cocos diagnosis was, I knew what my daughter's diagnosis was. In your gut as a mom, you know. And there are so many things that you can put in Schools in place before that EHCP, which actually builds up to all of the proof that you need in terms of the HEP. And actually, episode 37 with Tamsen, who's a Senate advisor, she really lays out specifically how, if you know your child needs X, y or Z, because you suspect this and you start putting those into place in school and the school isn't able to meet those needs, you start building that case towards the EHCP and the specialist school. So there are different, different ways to skin a cat, as they say, without going that route of diagnosis, because it is going to be absolutely cost prohibitive for people and no one can wait three or five years.

Catherine AithalCo-host20:30

Yeah, though interestingly, olivia, I've had a recent experience where I've tried to put things in place in school for my son and there's been a little bit of resistance until there's been some concrete Evidence or all the diagnosis as to what's going on.

Dr Olivia KesselHost20:45

So they're not part of that it part of that is because he's in a private school, I think, because that is definitely unfortunately very different rules and regulations in mainstream school versus private school, so they're not held up. You know they're more, they're more able to give you that, but I'm sure that also happens in mainstream school too. But actually legally wise parents can, can download and show that they they can Actually fight more, I think, than you can in a private school in some circumstances.

Catherine AithalCo-host21:13

Yes. Well, the other thing that could help parents which I found when I was going through the tribunal with Cocoa and her diagnosis If you get a good occupational therapist at the beginning of your journey, they can look at Signs for a whole range of different Special education needs. So they can look at dyslexia, dyspraxia, autism, adhd and if they find They'll do very thorough assessments, they'll come and see the child, they'll do assessments with the child, they go and they'll come and see the school and parents. It'll be. It'll be very thorough. If they indicate in their report that it's likely that your child Could have a diagnosis of autism, for example, that is enough to be able to get it onto the EHCP and to get the help through school. So you don't you may not then necessarily need to go for the specific diagnosis if you get a good enough educational psychologist report. Now again, they're not cheap.

Dr Olivia KesselHost22:16

If you just mixed up two terms there, catherine. You used OT in the beginning and then you said educational psych. Is it both, or is it one or the other?

Catherine AithalCo-host22:23

I'd say I've, I've, I've had psyched. Yes, it's ed psych.

Dr Olivia KesselHost22:25

Sorry if I've confused people, sorry there's no, okay, that makes more sense because I was wondering how an OT could diagnose Not those conditions.

Catherine AithalCo-host22:34

Yeah, Ed psych. Yes, so if you get a good ed psych at the beginning, they can look at all of the whole, the whole range, because that's the that's the other issue I found when we were going through this with Cocoa is Well, where do I start? Because I think she's got this, I also think she's got that and I've also Think she's got that, and all of the things aren't joined up. So you could go and you could get a dyslexia assessment, but that wouldn't tell you whether she had ADHD or not. Or you can get an ADHD assessment, but they won't tell you whether she's got autism or not. So there you know.

23:02

Eventually, what we did was we had a ADHD and autism assessment at the ADHD and autism clinic in Oxford. They did ADHD and confirmed she had and autism, confirmed she had both of those things, but they they couldn't tell me whether she had dyslexia. So it was only then, when we went on to have the educational psychologist report as part of the tribunal, that we then found out she also has dyslexia, which he Uncovered. So do you see what I mean?

Dr Olivia KesselHost23:27

It's, it's, yeah, it's almost better to start with Ed psych because because you're gonna get a Better picture of what's going on than getting those individual diagnoses as well. Which is interesting. With Alexander for ADHD, the psychiatrist just decided to do the autism as well because she said it's often difficult to die. Her specialty was like girls and autism. So she did, she did questionnaires for both because they, if you look at autism and ADHD, I kind of view them on a spectrum so you know where one starts and the other ends is it can be blurred and especially with with girls and how they present. So I think you know just to do one without the other is like Not a good idea. I think you definitely Need to look at autism and ADHD together. But really good point there.

24:12

And an ed psych is a really I didn't understand what an educational psychologist was actually Initially in my journey either, but how they're able to really look the classroom supports, the things that your child. It's a real practical assessment when you read it. And actually my ed psych said Question ADHD and in her report and I just kind of skimmed over that until I got into I didn't want to hear anymore. I didn't want to hear anymore. Yeah, you know. Yeah, you know what? Yeah, at first you think, well, she's got this, she's got that, she's got the other, and then you realize that most kids have an alphabet of letters behind their name because it is, I do think it is a spectrum, and it is the neurodiversity spectrum, and so these things all come hand in hand with each other.

Catherine AithalCo-host25:01

Yeah, it's like a Venn diagram where you've got some yeah, with each of the different diagnosis that overlap Characteristics Exactly. They overlap with each other Absolutely.

Dr Olivia KesselHost25:12

Yeah, and, honestly, a lot of what you will do to help these children in many ways is quite similar. There are differences, but there are also a huge amount of similarities. So it's to your point you can empower yourself as a parent to, if you trust your gut, to be able to have those conversations with your school. And it's disappointing I mean the story that you shared there with your son's school why wouldn't they? Why wouldn't they want to put things in place that would help your son? Why wouldn't they want to try it?

Catherine AithalCo-host25:46

Yeah, I don't want to do down the school at all, but it's the most amazing school and they are doing everything they can to help him. I think there is just a sense of, oh well, we don't usually do that until we've had the diagnosis, or we wouldn't usually do that until we've seen what needs. So, as you say, one person with autism is one person with autism, right. So often with the assessments you'll get a really clear picture of exactly what you're dealing with, what kind of autism you're dealing with, and therefore the school can then implement really specific bespoke needs for that child, and I think that's where that was coming from.

Dr Olivia KesselHost26:25

Okay, that makes sense, and I understand where the schools are coming from too, because they want to know what's the right and it feeds into my doctor background as well. I want to have the diagnosis so that then I can know what to do about it. Same as the school, they want to know what things to implement and put in place. Unfortunately, because of all the issues we've talked about today, it's really difficult to get that diagnosis unless you can fork out a lot of money, and even then there's waiting lists now, even with private assessments, yes, so we waited about three months for the private assessment.

Catherine AithalCo-host26:55

I have seen a few things recently where some private assessment clinics have been offering a sort of quick assessment for autism and ADHD where you can pay slightly less and they'll give you an indication of whether you think whether they think that might be an issue. So I've seen there's a little bit more of that going on now because they're cognizant of the fact that people are waiting so long on the CAMHS waiting list and if you get an indication, what does that then do for you?

27:28

Well then, I think that that may be enough for some schools or it may be enough for the EHCP If you've had that smaller initial assessment from a private practice.

27:40

I mean, the other thing to mention about the connection between assessments and EHCPs because this is really important is that the EHCPs that are written by people special educational needs practitioners in schools and places like that or from CAMHS are often really poor and can be quite generic and don't actually answer the questions that are in the boxes on the EHCP.

28:13

So another thing I would suggest for parents who are going through this process and specifically around EHCPs is just to be really, really over the top specific when you're going through those boxes on what exactly it is that your child needs in those areas, and then we're talking really specific, so things like they will need one to one support in these many lessons over this period of time for the next year or six months, and which equates to seven hours per week.

28:50

That sort of specificity is really required on the EHCP, and so we found that when we got the initial EHCP back from the local authority that it wasn't specific enough based on all of the assessments we've had done, so they haven't actually transferred the information from the assessments through onto the EHCP. So I had to do that. I had to go through it all with a fine tooth cone and say, right, the speech and language assessment said this this needs to come on to the EHCP. And I know that another lady who's literally just had some additional funding through the process for her son had to do exactly the same. She had to go through all of the assessments herself and transfer the information from those assessments onto her son's EHCP because that hadn't come through from the local authority.

Dr Olivia KesselHost29:44

Yeah, and I think it's again. They're overstretched, they have too high of a caseload. They don't have the time to actually be as specific as you will as a mum and as a you know who's trying to make sure that your child has the right tools and support in place to flourish in school.

Catherine AithalCo-host30:05

Yes, Well, we've talked about this so many times, Olivia, haven't we? In these situations, you have to advocate for your child and no one else is going to do it. You have to, kind of really while I did was research, find out as much as I could not take no for an answer and really advocate for your children. So again, it's just the same around this. The only frustrating part of the topic we're discussing today is that you cannot speed the CAMHS process up, and so you have to try and find workarounds.

Dr Olivia KesselHost30:40

And it's interesting also because sometimes you know and you're you're talking about the ed, psych and the that being enough to put in the EHCP, because I have heard other parents talk to me about how having a private diagnosis from maybe a clinic or something like that sometimes isn't enough to get in the EHCP, or isn't enough for schools because it's come down the private route versus the CAMHS route, and I guess that probably comes from an educator standpoint, of hesitancy to know that that assessment has been mean tested and is, you know, compliant and is following governance such as CAMHS should be, you know.

Catherine AithalCo-host31:20

Yeah, so I'm. I would that. That's quite concerning for me that if people are pushing back and saying that private assessments aren't good enough for EHCPs, I would say you need to very much research that and push back on that, because I don't think that's the case personally. I think that is that's if you have a private assessment, you need to then make sure that that information goes on to the EHCP and that should be taken into consideration.

Dr Olivia KesselHost31:46

Yeah, and I think it goes beyond the EHCP. It's more of getting into some of these specialist independent schools, let's say for autism or you know a special condition that you know it might be on the EHCP, but if they haven't had that actual diagnosis from CAMHS, they're excluded from admission to those schools, right. So it's a little bit of a clarification on that point, do you think it would?

Catherine AithalCo-host32:07

be helpful to just break down the difference with. We're talking a lot of, you know, ot Ed Psych. Do you think it would be?

Dr Olivia KesselHost32:13

yeah, so yes, absolutely, let's start with occupational therapy.

Catherine AithalCo-host32:16

So occupational therapy is more of a physical assessment and it's to do with gross and fine motor skills. So that's where you, for example, might get a diagnosis of dyspraxia, which is where children struggle with either fine or gross motor skills or both in our case and that can affect things like movement, handwriting, coordination, spatial awareness, proprioception, which is the ability to be able to feel feedback. That's one thing that occupational therapy does. And then it also looks at some more specific things around visual and spatial. So, for example, if your children have difficulty identifying shapes, being able to copy, re-copy shapes back down on paper, being able to record information from a board down onto paper, that sort of thing. So that's a very brief summary of quite an in-depth profession, but hopefully that's helpful.

33:17

And then educational psychologist is somebody who will go into the school and look at them in the education setting and then make a judgment based on a number of quite in-depth assessments that they will do. So there's some assessments that are done by hand, some assessments that are play assessments, some assessments that are done on the computer, and you can look then at the child in their setting. What you want to be really careful with with educational psychologists is. The thing I've found is where they don't do all of those in-depth assessments that they should be using. So, assessing whether to use somebody or not, just check all of the different systems and tools and processes that they use to diagnose your child, because there's lots of them and some people pick and choose and potentially don't cover enough areas. And then I think autism, adhd and dyslexia assessments kind of pretty much speak for themselves.

Dr Olivia KesselHost34:11

And there's one other, which is speech and language assessment, otherwise known as SALT, which looks at word recognition, ability to speak, working memory. That's also looked at by the Ed Psych as well, but it's how they access language, how they communicate, what their level or ability is in forming sentences. And it's really key, especially when you have individuals who are maybe late at speaking, unable to speak, unable to communicate properly, and then they also should come into the classroom as well. In those circumstances as well, observe the child in the classroom and do the right assessments with the teacher and with the child themselves assessment we have for Coco was so thorough.

Catherine AithalCo-host34:59

The woman doing it was absolutely amazing. We don't have what you might refer to as traditional speech and language issues. It's not obvious, but there's a lot of issues around comprehension, social skills, reading, facial recognition, all of that sort of thing which this speech and language person would also be able to identify. So and again that overlaps with autism. But there are lots of elements of speech and language that aren't that they cover, which maybe not quite so, maybe aren't quite so obvious.

Dr Olivia KesselHost35:30

Yeah, absolutely, and those are very telling. You know, and you know all of those reports and Alexandra's had all of them, including physical therapy one as well, which is a less known one for kids with cerebral palsy or other motor dysfunctions. But you know, when you read them back, as a parent I mean I would literally have to have a box of Kleenex by my side because they are painful to read in there. If they're done well and they actually look at your child and your child does have needs, it's very hard for a parent to read them, but it is so helpful as a tool and also to be able to then monitor progress with your child and the school, to be able to know where they're at and where you want to get them to and then know what to put in place.

Catherine AithalCo-host36:15

So I think that's a really good point you've just raised there, olivia, about reading these reports. It's, it's an absolute emotional roller coaster because on the one hand you have the report and you're thinking, please let it be bad, you know, please let it reflect all the issues and the challenges that I've been dealing with, you know, and then at the same time it comes through and it's like you've been run over. It took me, you know, after each one that I got back, I'd read it, I'd be incredibly emotional. It would take me a good few days to, you know, digest and then I would say, a good few months to really have, like it, bring it into my soul and infiltrate it into my parenting.

36:57

It's, it's such an emotional roller coaster and so, on top of the difficulty with thinking, there's an issue getting the assessments, then actually getting them, receiving them and reading them. That is also a really difficult sort of road to go down. So I think that's a really good point that you've raised there, olivia. And again, if you are in that situation and you're getting these reports back, then just reach out to your networks because everybody, a lot, of, a lot of other parents there are a lot of other parents out there who've been on this journey and can offer that support, because they know how you feel.

Dr Olivia KesselHost37:32

Yeah, and I, you know it was actually on a support group when I first got Alexandra diagnosed with cerebral palsy and I'd read her MRI, which it, which is like an assessment. It's looking at her brain and it wasn't pretty and you know what they said. No matter what the assessment, no matter what the MRI says, your child is still the child that you have loved all this time. They haven't changed. Okay, the report might be in black and white, but they are still the person you love. That's in your heart and never forget that, because the assessment is just one dimension and you know it is one dimension. They are still that whole lovely little person that you love to bits and pieces and to always keep that in your heart, this is just some. This is a tool to help you get and it is the worst case scenario and it's not, you know, limiting what your child can become in the future, and I think that's important to hold in your heart.

Catherine AithalCo-host38:23

Let's talk about that, because I absolutely somebody said that to me when I was expecting the COCO's ADHD and autism assessment back and somebody said exactly the same to me just remember, she'll always be the same little girl and actually that really, really helped me. But let's talk about the tools because, again, we touched earlier on whether or not we want the diagnosis or need it. For me. I know you said for you you wanted it from a sort of made me or a medical point of view. I needed it because I felt like I didn't really know what I was doing and I felt that if I understood COCO's needs better, then I would be a more compassionate parent, and that is absolutely what happened.

39:04

So when so I didn't, I didn't realise early on that she also had autism. When I, when I, when she had the diagnosis of autism, I was then able to be much more compassionate as a parent about what she was going to read up more about it, understand more about it. The same with dyslexia diagnosis well, with all of them, really, but some of them I knew more about than others before we went into this. But for me that it was almost like shining a light on it, a really bright light on it then, then almost made it easier. It made it easier to parent her in an empathetic and compassionate way, rather than finding those things, those traits, quite irritating it gave you understanding absolutely yes, and I I needed that understanding and actually now that understanding has helped me parent my other two children.

40:08

But I I'm not sure if I hadn't, if I hadn't had the diagnosis and I was able to go into the detail and research as much as I had, whether I would then find it as easy to deal with some of the things. I'll give you an example. So, for example, it's impossible for Coco to be able to choose what she focuses on, and before the diagnosis of ADHD, it would just be so irritating because I'd say, could you just go and brush your teeth? And for me, just going and brushing your teeth, it's just got stairs and brush your teeth, but for her, that's, she'll gets distracted. Halfway up she'll see a toy and then she'll decide to focus on that and it's. It's not like she's consciously deciding, it's just that's what's happening to her and her mind.

40:51

And so now I can be way more empathetic. Rather than say, oh, could you just go up and brush your teeth, I'll say, do you want me to come up and help you brush your teeth? And someday she'll say yes and some days she'll say no, I've got it, I can manage. But also with losing things packing her bag. I just don't, I don't, I don't force her into packing her own bag anymore because I used to think, oh for goodness sake, she's so, she's such and such, she is old, she should be able to pack her own bag by now, and I'd put a visual reminder up on the wall, the visual reminder still there, but she's still coming back. So but I, I mean, I'm ready for it.

Dr Olivia KesselHost41:27

So I, because we've had the diagnosis, I know what it looks like, I know that she can't, and so yeah, you know it's, it's so true, because it also it takes that pressure off, because you know that that is challenging. I mean, alexandra says to me, she goes mommy, I can't follow you if you give me three instructions. She's like, and I said, how about two? No, can't do two either.

Catherine AithalCo-host41:48

One instruction at a time one can be hard right, even one is yeah, yeah brushing the teeth similar things that you've got to do to go and brush your teeth.

Dr Olivia KesselHost41:59

That could be challenging yeah, and it takes off. It gives you, it gives you empathy and understanding. You know what I mean and it changes the I think, as you've just said as well, with your other two kids it's, I mean, I don't have any other children, but it is the parenting handbook that I have been raised with and that I thought I was going to use, has, you know, been burned and thrown out the back door. But you know, and the new way that I parent has been cracked open by the diagnosis and by realizing, you know, it just doesn't work.

Catherine AithalCo-host42:32

You know what I mean it doesn't work, talk about.

42:35

And the other thing, well, I totally agree with you and my, my, my old parenting handbooks been chucked out to. And there is another question with assessments about whether you should share it with your child or not, that I've been asked that a few times. I think it just needs to be age appropriate. So with with Coco, the only time I started to share the diagnosis and what I knew about with regards to her special educational needs was when we had to move her schools and she got very unhappy and didn't understand. She kept asking why she was different, and so we then I was then able to explain it through to her, use the assessments actually the language in the assessments to help with that, and there was a number of books that people recommended that helped me explain that to her. With my younger son, I haven't gone down that road yet because he's too young and I just don't feel like it would be necessarily that helpful for him at the moment. But as he starts to get a bit older I will share that information with him.

43:38

And then the other question is around whether you feel that you want to share that information externally, and I would say that's just a very, very personal choice. So for me, I am championing children with special educational needs, raising the profile as much as I can to highlight the good, the bad, the ugly all around it, and so for me, saying that I'm a parent of a child with special educational needs is really important and I mention it a lot and actually I get some amazing feedback and I get lots of adults talking to me about their diagnosis. But there will come a point where I need to discuss with Coco does she want me to share that information or not, and did she want to share it or is she happy to share it? And so I think again, it's a very personal, difficult area to cover, but you just need to think ahead about that and whether you and how you want to deal with that sharing of that information.

Dr Olivia KesselHost44:42

Yeah, absolutely, and I think it's very personalized and it's very family-based. And you know, I've taken a very similar route to you as well in terms of Alexandra. She's very proud of the podcast and she's very proud of having ADHD actually, and she, you know, she I pretty much think my father has it and I probably have characteristics, if not a full diagnosis, but I can't afford to diagnose myself because it's too expensive. But I think that you know, though I'm hoping in the future there will be a time where there's a normalization and that neurodiversity isn't viewed as a disability or a special education needs. It's how some of us are built and it's how some of us are, and you know that's what I hope for the future.

45:24

I already see huge changes in my lifetime and, you know, in the older generations lifetimes where you know it was even, you know, worse, but you know we still have a long way to go.

45:35

But I think personal privacy and also teaching kids that they have rights in terms of what we share and what they share is so important. But I hope one day we're all. You know, I'm proud of my neurodiversity and I'm proud of my daughter's neurodiversity and it's, you know, to me it's like you know, she can, you know, run the 500 race really, really fast. She can do all these other things you know that I'm super proud of her with, so it's a. We're not there yet, though. So there is a need to be cautious with our children, with our privacy and with what we do, and we all handle things differently, and no way is right or wrong. You know, I respect parents who don't want to talk about it. I respect if they don't want to use children's names, and I also respect those that do, because there's enough space for all of us, but you have to find what's right for you and your family.

Catherine AithalCo-host46:27

For all parents in any, in any respect. You know we can't go around judging each other. It's just such a wrong thing to do. But particularly around this area it's such a personal thing, it's such a personal choice and everybody has to take their own path in that respect. And again we're talking about assessments. But back to that. You know, deciding whether that's what you need for you and your family and your child is a very personal choice and we touched on it already. But it's not necessarily just down to whether you can get the support or not in school, but it's also down to other reasons and things that may be very personal to you. So that has to be respected.

Dr Olivia KesselHost47:07

Well, as we wrap up and I think it's been a really great discussion today I love to ask my guests but I guess it's both of us today what top tips would we leave other parents with? And I guess I'll kick it off, because I think the first most important tip in this all is to trust your gut. As a mom, you know what's going on with your child and you don't need a piece of paper to actually validate that or in my case, you might, and there are others too but really just trust your gut, because you know your child and you know what they need and you know that you can find the resources to do it. So that would be my first tip. Now I'll hand it over to you for a tip.

Catherine AithalCo-host47:45

Yeah, that is a good tip. So a couple of tips for me first. We've already covered, but maybe start with the educational psychologists first. That may be a good thing, absolutely. If you find a good one which will give you a range and an overview of what might be going on, that will be really beneficial. And then my second tip was it's gone out of my mind now.

Dr Olivia KesselHost48:08

Well, I'll do my second one. For me, then, first of all, is that there are a lot of things you can put in place in school, and I'd really recommend anyone to listen to Tamzin, the head and advisor I mentioned on episode 37, of how to do that and what your legal rights are to be able to do that in school, and that kind of sets the foundations for billing towards your EHCP, with or without a diagnosis, and, more importantly, it gets the help that your child needs in the now. And that's the problem with all of these assessments and EHCPs they are delayed and really your child needs support now. So I think it's really valuable to find the support that your kid needs now while the other things come into being.

Catherine AithalCo-host48:50

Yes, and my second tip is that there are a number of people you'll find in your local community who have a lot of experience in this area and won't charge you a fortune to look into things for you. So there's kind of ex-special educational needs teachers. I know there's a couple of people in the Henley area who are supporting families and you can go to them for advice and they won't charge you a fortune. So that might also be a good place to start.

Dr Olivia KesselHost49:18

Absolutely, that's a good advice, and also with the support groups that you mentioned the WhatsApp groups and there's Facebook groups and stuff like that that you can also reach out for support.

Catherine AithalCo-host49:27

Yes, and reach out to me. I'm always available for a chat, and a number of parents have reached out to me since the last podcast that I did, and I'm more than happy to spend time helping parents. It's absolutely something that I feel really passionate about.

Dr Olivia KesselHost49:45

And I think that's one of the most beautiful things about this neurodiverse world that I am now a member of, as is my daughter and as are you, is we are all the wonderful moms I meet who are so passionate and who so want to give back and help each other, and it's really, really a nice community to be in.

50:03

It is an amazing community and what I will try and do on the podcast actually is try and come up and give some links and resources for people to find access to educational psychologists, occupational therapist, special assault speech and language therapist. Some of the ones that I know have been quite good, and if any listeners have any recommendations, please add them in the comments to this podcast and then we can compile that so that can help other parents navigate. We can maybe even have a naughty list of which ones to go to. Probably not. We'll just put the good ones on there because it's you don't want to be wasting your money or your time or your effort with someone who isn't going to give you actually a good assessment or a good diagnosis.

Catherine AithalCo-host50:50

That's a great idea and then ask for testimonials and check the thoroughness of the assessment that they're going to go through.

Dr Olivia KesselHost51:00

So thank you, Catherine. Thank you for coming on again. It's been a pleasure to have you. Thank you for listening Send Parenting Tribe. Please let us know if you've enjoyed these podcasts by leaving a review or rating on your preferred platform. This will help more people to find the podcast. If you haven't already, start following us on Instagram at send parenting podcast. Next week's episode, we will be joined by Adrian Bethune, a primary school teacher and author of Teach Happy. He will share with us the importance of autonomy in the classroom, both as a student and as a teacher. I would recommend tuning in

Please excuse any error as this transcript has been auto-generated