Not Recognizing that my Child has Special Need/Autism

[AdelaideRenee]

Hello, I don’t know if this is the right place to say this or not, but I am feeling quite down. So, to explain, I have a 13 (14 on Friday) year old, 9 year old twins, a 4 year old and 1 year old triplets. My triplets need a lot of attention right now and so does my 4 year old, she isn’t good at entertaining herself and she doesn’t like sitting to do an activity like colouring or watching TV as she says it’s “boring”. We decided that it would be best if she went to childcare as then she is looked after and can have her needs met. She started Monday and goes in 8 am to 1 pm. She was nervous the first day but was happy when we picked her up. She has been happy going in and coming out, so we thought it was all good. Today, I took her into childcare, a staff member asked to speak to me privately, she said “Look, we know you are struggling but we don’t really take children with special needs especially during this pandemic, your daughter needs a lot of support and we don’t have enough staff” I told them that she doesn’t have any special needs that me and my husband are aware of, and she replied “okay, well, we’ve had children with autism come here before and she presents as autistic. I would suggest that you get her seen and diagnosed then get her a care plan with one to one support written in it then she can come back here with proper support so we can provide for her better. She can stay for the remainder of the week but until you do what I have suggested, we can’t take her anymore.” I said “okay” then left after that as I was too upset and felt a bit embarrassed.
I am really sad because I didn’t notice that she had special needs or autistic traits. I was diagnosed autistic when I was 12 years old so I would’ve thought that I could spot if my child had it but clearly not. I feel like I have let her down. And we also now don’t have childcare which we desperately needed. I don’t know what to do if I am honest, I feel like crying but I don’t want to cry in front of my children as then they will ask me what is wrong and I don’t want to worry them. I will tell my husband privately when he comes home from work but I don’t know what we should do. I grew up in Finland and my husband grew up in Greece so I don't know how UK is with this stuff and I don't know if my husband would know either. Thank you for reading.

Side note: We are aware that Covid is still happening however, my husband is still working most days and my triplets need a lot of attention as they are learning to walk, talk etc and my older children can entertain themselves fine so it felt like the only option.
I'm also reposting this here to get some more advice.

No.
A Social worker works for Social Care.
A Health Visitor works for the Health Authority.

I am struggling to understand how you aren't in regular touch with your Health Visitor if you have baby triplets. You should be on their radar even with one baby. If you don't know who they are then call your GP tomorrow, tell them you have 1 yr old triplets and a 4 yr old with additional needs and that you need an appointment with a Health Visitor. I don't understand how you don't have one. They (traditionally used to be, but training has now changed and they needn't be) nurses who specialise in looking after pre-school age children (0 - 5 yr olds) and their families.

@backforgood I have a social worker, a GP and a paediatrician but never heard of this? Is it because I didn't give birth in UK? I will ring tomorrow as that is concerning to me and I feel a little out of the loop. Thank you for bringing this up

@BackforGood I searched it up and I just wonder, is this why I get a midwife visiting? Or is that something else? I do get regular visits from a midwife (not since covid though) but never told she was a health visitor.

I think she was probably a health visitor rather than a midwife. Midwifes only visit a short time after giving birth. After that you see the health visitor

Usually, the midwife hands over to the HV shortly after birth.

My dc are adults now, and then it was within a week or so of giving birth. That could have changed in the last couple of decades, and might be slightly different with prem babies (which I assume your triplets were) or with multiples, but, in a professional capacity, I work alongside HVs sometimes and know they would normally be involved with a family with 3 x 1 yr olds, and that normally they would signpost for further support.

@purpleme12 @BackforGood Oh I think I got confused, I had a midwife then she switched to another lady who I assumed to be another midwife but I guess she is the health visitor?

That sounds right

@purpleme12 Okay, I will get in contact then. Thank you

It is possible to defer reception entry for summer born children and this might be appropriate, so she could start next September when she is already 5. She might also not be suited to the school your 9yr old is at. Although it is normal not for dc to be able to read when they start school, a school which is not sympathetic and willing to work with a child with special needs can be an uphill struggle. It might be worth trying to talk to the SENCO at your 9yr old's school about your 4yr old, about how they might approach her needs. You will learn a lot about the suitability of the school in their reaction to your questions.

@TW2013 Thank you, this was useful. I did bring up my concerns to the school SENCO about one of my 9 year olds last year as I had a feeling she had dyscalculia as she finds maths difficult and can't tell the time properly but the SENCO said that I was overreacting and she is fine at maths and can tell the time great, though it was a confusing conversation as I was talking about Madeleine and I did say her name in the conversation but then at the end she said "no need to worry, Evangelia is fine, it is probably just pregnancy brain" I did reply "I was talking about Madeleine" and she said "yeah, she's fine too" I really couldn't follow the conversation as I didn't know who she was talking about or if she had them confused and I still have no idea what the conversation was. She is an interesting lady, she touches me constantly like stroking my arms, touching my face, hugging me and touching my bump, I know some people do this without thinking but I really hate being touched especially when I am not asked. Anyways, I might email her tomorrow or wait until school is open so I can talk to her in person, maybe both I'm not sure. Thanks for the suggestion

She sounds as if she doesn't have great boundaries, at least with social distancing she can't get too close. With an EHCP you would be able to name a school so not necessarily the one your 9yr olds attend if it doesn't seem suitable. If you are on Facebook it might be worth searching for a local SEN parent group who might be able to help you navigate the local system and recommend schools.

I've possibly been a bit unclear @AdelaideRenee. I said 'you need an action plan' but then I listed the actions you can take. I probably should have said "This would be my action plan in your situation".

Ok, so Portishead is also North Somerset LA. In North Somerset, ASD assessment is accessed through the SCAMP pathway. You would need your GP/Health Visitor to refer you. Your Health Visitor can be contacted by telephone on 01934 533300.

Here is the application form for a school place.

Here is information about deferring the school start until next year. You must realise that any top up funding for your DD (for SEN support) would stop once she reaches school age, so you could find yourself without a nursery/preschool place of they can't manage her without extra funding, or you'd have to pay yourself for the extra support.

I would contact your Health Visitor first

@TW2013 I don't know what things are in place at their primary school in Covid as they have not put it on their website and they didn't email me and I didn't receive a letter so I don't know what they are doing for socially distancing but the SENCO does touch people a lot, she once grabbed one of my 9 year olds (8 at the time) hands then tried to paint her nails, I said tried because my daughter took hand away and wouldn't let her do it, none of my children like their nails painted, so I don't know why she tried to do that.
Thank you for the suggestion, I will have a look

@Lougle Thank you, very helpful but I might need to reread this stuff later with my husband to make sure I got the information correct. I see the application is just a tick box/fill in thing so that may be an easy thing to start off with, do you how long do the applications take to find out which school and when going?
Do you think it would be worth it to at least ask the primary school if they have spaces for either this year or next year?
I will contact her.

I spoke to GP and health visitor and had two different responses, the GP said she is doing these behaviours because the triplets are taking time away from her and I should have more time one on one with her as she must be feeling left out and if I leave it too long then she will end up resenting her younger sisters.
The health visitor said she will get some things she think would be useful up together and she suggested some really helpful things.
Am I allowed to follow what the health visitor says other then what the GP said? Is the GP advice more important? I'm not sure what to do as I have two different advices.

What did the health visitor say exactly?

It is easier for the GP to say it is the triplets and spend more time with her as that costs them nothing. It doesn't explain the nursery issue and that she hould be old enough to start school so she might need more support. There is nothing to stop you trying to spend a little more time with her (would one of the older dc be able to mind the triplets in a different room for example) and pursuing the HV advice. Did you explain that you have ASD and the nursery are refusing to take her back? I would welcome the HV and see what she can offer.

@purpleme12 It was on phone call so I may not repeat the same words correctly. So I explained to her all that happened and I told her some behaviours my four year old does and she said that she probably would need to see a paediatrician and she recommended that a SALT may be good as well. She said that she can't say that it is autism or anything like that but since I have autism, it may be better to go in that direction, however, to be open minded is best. She said that she will try to get a collection of information and services together and send them to me so she can do it more thoroughly. She also said that I should try to set up a formal meeting with the nursery so there is better understanding of why she can't go back and to find out what exact support they think she needs and why, she said I should probably bring in at least one professional to the meeting so that there is no miscommunication. She said that I should probably collect as much information together like what nursery said and what she does at home, the more specifics the better.
She also said to try and build activities around her interests to keep her engaged and let her have options. And that she may need more sensory input throughout the day and maybe speak to an OT about that.
That is all I can think of right now and I think that may have been it.

@TW2013 I explained everything to the GP and he said that she is too young for a diagnosis like autism and the reason nursery have that issue is because she is trying to get the most attention she can there to make up for lack of it at home.
I mentioned her speech and he said that the reason her pronunciation isn't good is because it is confusing living in a house when parents have two accents that aren't the ones from the country they live in (I have an accent but my husband speaks very clearly and hardly has an accent).
I try to spend time with her as much as I can and I try to use the triplets nap time as her one on one time but some things I can't leave her if I need to check on the other children. For example, she loves playing outside which is fine but she tries to chew on sticks and when I tell her not to she sneakily does it so I can't pop into the house for a minute if I needed to. Nursery said she was licking stones so that is a worry that she will find some to put in her mouth. She also is very loud in the garden and a neighbour has complained many times and he shouts over his fence at her so I have to be there to remind her of her voice levels. I could try seeing if my older children can try doing your suggestion but I don't want them to think that I am only using them as babysitters. I definitely want to spend more time with her though as I love being with her as she can be really funny and she beats to her own drum.

Don't be put off by the GP. I was told I was overthinking, neurotic, 'being a nurse' (I'm a registered nurse), etc., for almost 3 years. Once DD1 was finally seen, she had a brain malformation and epilepsy, as well as global development delay. She has been at special school since year R.

I'm not saying your DD is similar, at all, I'm just saying that most parents get told their child is 'fine'.

cchp.nhs.uk/cchp/explore-cchp/health-visiting/health-visiting-north-somerset/north-somerset-health-visiting-team. Speak to the North HV team in Portishead, they can do an assessment and refer or sign post you in the right direction for support as your daughter is not yet in school.

Sorry seen that you have already spoken to HV. I would go with them. The GP may have a point regarding some of the attention seeking behaviour but 4 years old is not too young for a diagnosis. My son was referred aged 3 and received his diagnosis age 4. I know other children that were diagnosed at earlier ages too. If the HV can refer you to the community paediatrician that would be best, the waiting list is long so good to get the process started asap.

Contact the council education department regarding in year school admissions. They may have some spaces come up once the school year starts, it is hard to know at the moment as with Reception places are often full once allocated prior to April and unless children move or do not take up places in September you go on a waiting list.

Even if she doesn't go to a school nursery a larger nursery with more experience of meeting the needs of children with special needs might be a better option as they will be able to help you with getting support and an EHCP if required.

@Lougle Okay, thank you, it is hard because I want to listen to what he is saying and not try to just have an I don't care attitude but listening to the nursery, people on here and the health visitor, I want to make sure I listen to everybody and incorporate all of it so I can try my best for my child as I don't want special needs to be missed if she does have them because I had a very tough childhood as I didn't fit in and just felt naughty and misunderstood the whole time until I was diagnosed and I don't want my child/children to feel like that as it sucked.
Sorry that it took you so long to be heard, I am sure that must have been very frustrating especially as you know your daughter best.

@Choconuttolata Thank you, this is helpful

I emailed the nursery earlier today to talk about what the health visitor said, I received an email back around 5pm but it was quite long so I wasn't able to read it until now, I copied it and will paste it here as I don't know how to respond and need some opinions

Dear Adelaide,
I gave you advice yesterday, you need to get her assessed and get her a care plan with funding for 1:1 support, I’m unsure why you went to a health visitor as you need an educational phycologist and you can get this by contacting the local authority. We cannot give you a meeting like your health visitor suggested as we cannot have professionals who are not apart of our team come into our meetings unless the local authority have put this in place. Our team had a meeting on Tuesday evening about A because we were struggling with her and our conclusion was that we can no longer take responsibility for her as her needs are too high. I gave you reasons yesterday morning as to why we think this and as to why we can no longer be responsible for her. We can hold her placement for 10 months if you do as we have suggested, otherwise we cannot have her apart of our school as we can only take her with a care plan. Today, A’s group were doing a puppet show and she refused to get involved, she was trying to go outside into the rain, because of that, one of our staff members had to stand in front of the playground door so A couldn’t get out, that took a staff member away from other children who also need support. We cannot have staff doing that unless they are appointed to A.
We sympathize as these are hard times however, we need to do what is best for A, our other children, and our school.
We all hope that A enjoys her last day tomorrow,
Kind regards,
Miss (teachers name)