To think my granddaughter will blame us?

[MyOtherCarIsAPorsche]

There is much documented evidence and official reports into the importance of building firm early foundations for each and every child. Also, many adults blaming/excusing their behaviour because of poor childhood experiences.

It feels as if we are just sitting back and allowing our granddaughter to suffer and that, in future, she could turn around and say we did nothing to support her. This makes me feel so bad.

My daughter and I watched her sports day. The weather was lovely. It was a great atmosphere. KS2 children were sat one side of the track and parents opposite. We were sat directly opposite to where my granddaughter was. She was at the back, on the end of the row next to the finish line.

She looked so sad. She was staring straight ahead. She ignored us waving frantically at her. In the two hours that parents were allowed on the premises, no one spoke directly to her and she spoke to no one. All the other children were cheering, laughing, clapping, shouting encouragement and thoroughly enjoying themselves whilst she stared ahead. My daughter and I kept looking at each other, knowing what we each thought. It breaks my heart. She was completely out of her comfort zone. She has to really concentrate hard to cut out everything which overwhelms her - she can't cope with noise.

DGD took part in two races. She looked and moved awkwardly. People clapped but no one shouted her name in encouragement, like they did for other peers/students.

When she was picked up from school a few hours later, I asked if she had enjoyed sports day and she said yes - which is probably what she thought I wanted her to say.

She has no friends. No one has replied to her birthday invitations which will be in the summer holiday. No one has invited her to their parties this year. In KS 1, she attended all class parties she was invited to and some of the class came to her party, but this seems to have stopped this year as the children now invite select friends.

She has told her mum that she is lonely at school and that she would like to go to a new school and make friends.

We have been concerned for years that she has autism (like her mother) and have asked for help from health visitor, GP, nursery and school.

This academic year (Y3) she had 'leggo therapy' in the first term and THRIVE after Christmas.

She was referred to CAMHS two years ago but we recently found out that we have to apply again and fill in the forms again because of a change of 'systems'. She won't be seen before she goes to High School - the wait is now 5 years.

We've voiced our concerns since she was a baby and we're still waiting for help/guidance. She is now asking us to help her. We just keep hitting barriers.

How do you actually get help and support for a child who is begging for help?

I have been known to overthink ....
But like another pp said about her daughter - she looked really alone/sad/isolated/ignored. It was quite stark as all the other children had a special someone to chatter and laugh with. It was awful to watch.

@BaldingMum

Yes - absolutely heartbreaking.

I would get her checked out if she is sore in the ribs.

@Maddy70

My love for my children and grandchildren is intense have you not experienced this feeling? In fact I think you could describe it as fierce, unfathomably deep, I could go on.

I just feel so sorry for her - she has said that she is lonely at school. She recognises this and we have not been able to help her yet.

I do not want to wade in and tell her she feels/behaves this way because she is autistic and, as another pp said, there is actually no help whatsoever out there, therefore she has to suck it up in the hope that she eventually meets her tribe.

There seems to be a very long road ahead before that would ever happen.

That sounds like me at primary school.

Scrape together the money for a private assessment and get the school to provide more support.

@MyOtherCarIsAPorsche she should be checked out in case damage was done during the abdominal thrusts.

My daughter hated all school from the age of ten when it suddenly struck her that she was very different. That was the start of her frustration. She was selective mute throughout school, she spoke to family and friends and would not look at or speak anyone else. If anyone said anything to her she would put her head down. A teacher once said to me, in front of my daughter, that she was too familiar with the top of my daughter's head. My daughter didn't want to go to school anymore after that. It was a battle.

I'm concerned that my DGD won't be assessed before secondary school. The primary school supported our application for assessment after she had two full terms in Reception class. Unfortunately, we've just been told there's another five years to wait.

You can get help without a diagnosis. It sounds like she’s having some support at school. A diagnosis/ ‘help’ is unlikely to help her make friends very quickly. Could her mum speak to the SENCo again and ask what else can be done? A student buddy or a teacher mentor? Could she see a play therapist? So they have a small group for orhers with similar difficulties? Could she join a community group for children with special needs?

Just chatting with H - he says she should've been checked.

I'll ask her mum to ring GP tomorrow.

He's just said that I can use my savings for an assessment (as long as I don't raid the joint savings). A kind of win. But he says not to expect to pay for our two grandsons - who are both waiting for assessment, which is not really fair.

I do understand that of course. But the course you need to follow is through school and its her parent that should be doing that. Not you.
Her mum should seek send support in school

@MyOtherCarIsAPorsche what are the school doing to support her socially? Would a different school be a better fit?

Social stories can help, as can different "rules" for things she struggles with. For example with telling, the rule could be "it is the teacher's job to tell other children off" or " we don't tell unless someone is hurt". Or a visual flip chart with different scenarios and ways to deal with it like let it go, not my job and tell a teacher. Someone fiddling with a pen, not my job. Someone bumping into her by mistake ,not a big deal. Someone annoying her or being mean or hurting someone tell a teacher. Fill it up with various scenarios.

Sorry hope this makes sense. There are plenty of things for you and your daughter to try (while getting the assessment done) but I'd be here all night. And you probably know most of them.

Feel free to PM me about specific issues if you want .

We went private, £2.3k assessed and report emailed to me within 12 weeks of my initial enquiry. I never approached the GP as I knew she wouldn't hit their bar as she is extremely academic and has no challenging behaviour and they only put through the most serious cases due to the 4+ year waiting list I notified the school with the behaviours I had recognised and the concerns I had. They didn't see any autistic traits until AFTER her diagnosis and when they knew what to look for - plus she developed motor tics for a while which were very obvious stress markers.

However, once you get a diagnosis there is no magic wand of help that becomes available. You are far better to approach her and your other grandchildren as I they are, and with a genetic link that's highly likely and spend the assessment money in other things.

What your DD needs is to make social connection, preferably with others that are also ND, so look into groups like Lego or similar that attract the quirky children. Activities where they play alongside eachother opposed to 'with' each other. Get her on the waiting list for brownies or cubs and similar groups.

Playdates outside of the house are likely to be better than playdates in the home.

DD was never bothered about seeing other children during the holidays but as an only I thought it was important so enrolled her in activity days at least once a week to get a bit of social time.

Another option is to get a pet like a cat or dog if her mum has the capacity to look after it appropriately and if your DGD is calm enough.

OP, where are her parents in this? I completely understand your concerns, but the way you talk about your granddaughter, about paying for an assessment, about your husband refusing to allow it (and then relenting and giving you permission to use your own savings???) comes across as if you are the primary carers for this child. Is that the situation? Or do you just informally tend to take charge of decisions like this within the family?

I don't know but you write really well.

She sounds very much like my DD, who has been looking for answers about her differences from a similar age, now year 6 and about to transition to secondary. Although she is part of a lovely supportive school she has been unable to make meaningful friendships within her peer group.
So far we have had an independent speech and language accessment, a charity based therapy accessment (ot, salt, and learning and development specialist) and theraplay which have helped to secure an excellent ehcp. We are waiting to see if a funding application has been accepted for a private charity autism assessment.

The sendco completed out application for assessment here.
https://www.caudwellchildren.com/changing-lives/how-we-can-help/autism-services/autism-assessments/charity-funded-autism-assessment/

Why would she blame you rather than her parents? Assuming that there even is a reason to blame anyone. It is an unfortunate fact that some people don't have much capacity for happiness.

Parent as if you already have the diagnosis. It will help all the siblings.

Summer holiday birthdays are rubbish for everyone so scrap that, make it family only with a special treat day when she does start to establish a group of friends.

Encourage Lego group, scouts/guides, music, sports anything with a bit of structure. The whole best thing with complex imaginative play only suits a small percentage.

Encourage within sensible boundaries age appropriate, fashionable common ground. The right bag, normal clothes, age appropriate access to technology.
Don't mock Taylor Swift, model good behaviour, which she could mirror back at school.
Encourage a sense of humour, an ability to laugh at the crazy consequences of following a possibility to it's end so that you back off in everyday life.
Lots of books, stories, age appropriate box sets, watch together and talk it through Harry Potter, Anne with an E, etc.

My daughter is now 20 and amazing, off to work at Glastonbury, set of mates at uni.... But once she was so lonely at primary school. Sports day was actually the only days I'd sign her off sick at secondary until she found her safe space in the music department. Lots of similar kids there.

I think it would be worth paying for a private assessment- not that it would necessarily bring any extra support but you would then know, and it's leverage to get extra support in school,

My daughter is autistic (and ADHD) , diagnosed at 7 when I paid for a private assessment- she's high functioning and school and GP refused to refer her (for her very obvious ADHD).
We've found brownies very affirming and accommodating and a great place to nurture friendships outside school.

A diagnosis won't change your grand daughter or remove her obstacles in making friendships- but it helps to explain to others.

I'd change the birthday party date until when they are back at school.

If she wants to change schools - maybe look I to this?

I changed my DD school at year 3 to a giris only prep and it suits her very well. I know this isn't am easily available option financially but could you commute to a smaller school? Maybe a village school?

The thing that stood out to me is that she is asking to change schools. I repeatedly asked my mother to let me change schools and I remember being dismissed and, to this day, feel my feelings were never heard or mattered. I blame her for this but it has made me very resilient, having to find ways to cope alone from very young.

Changing schools is not necessarily the answer but your GD will remember if she was supported and her mother tried to help, or not. As her mother is autistic, there's a good chance she is too. An assessment may be one of the greatest gifts you can give her. The gift there is understanding herself and why she feels so different. That's so important.

If she's in a large school maybe a smaller one will help her more? Are there any social groups for autistic girls near you? She may find her tribe there.

My autistic godson learned similarly. I remember explaining a lot of idioms that used to make him very uneasy until they were explained to him. He’s now thriving at university.

I do not take charge of my children - I have a son and two daughters. They live independently and have done since their early twenties - about 10 years.

My husband is concerned about money being spent on assessing my DGD and it leading to me wanting to pay for her brothers as well which will be very expensive. Her four year old brother has unintelligible speech which could possibly be a permanent impediment. He has ARFID and many sensory issues. He is currently only wearing front fastening tops as he won't tolerate anything being put over his head or around his neck. He is tolerating a zip up hoody with nothing underneath. Obviously he only zips it half way. Mum has to find different ways of getting prescribed fortified drinks into him. School do not support him drinking these in school as they need to be refrigerated to make them more palatable which they refuse to do. He will not drink them at room temperature. It's hard getting the drinks into him in the hours before school and the time after school and before bedtime. A cool bag has been tried but is at room temp before lunch because the portacabin classroom is always tropically hot. Youngest brother is three (4 in Nov) and has complex needs, including global development delay and epilepsy - he has an EHCP. We think he has quite a high level of autism.

I childmind for both my daughters. We have six young grandchildren. I am more involved with my older daughter as she is a single mum and autistic with a fair few health conditions. She recently started antidepressants because she confided in me that she couldn't go on anymore as she feels that she is failing to get enough help and support in school for her children and that makes her feel like a crap mum. The school have already said that they are unable to meet the needs of her youngest child. She feels that teachers, doctors, consultants do not take her seriously and dismiss her concerns.

Her ex told her that if she went ahead with her last pregnancy he would leave. No form of female birth control has stopped my daughter from becoming pregnant. He stopped coming home as she progressed through the pregnancy. She followed him when he said he was working late and he was visiting sex workers. She then found a letter in his things which stated that he was paying £7 per month to two different women for two teenaged children she didn't know about. He'd said he didn't have children. To top it off she discovered he'd been in prison for arson. Her father changed the locks on her house and she still lives in fear of her house being burned down.

I take her children to school and pick them up for 5 days out of 10 as she works part time. I have her children for a sleepover every Friday. Since her brothers have stopped over my DGD sleeps in my bed instead of the children's bedroom. I can spend hours just staring at her beautiful face when she's sleeping. We can spend hours talking before she eventually fall asleep. She has a benign sinus tumour which gives her constant headaches and eye pain - calpol does not relieve the pain, she's been stopped from taking neurofen as she has been complaining of stomach pain.

For the past 12 months, I have accompanied my daughter to most of the children's appointments at school and doctors/hospital at her request. I do not force my daughter to take me. I would rather stay at home as I hardly get time to myself. I cannot get to all of the appointments as I do childmind my younger daughter's three young children. Her oldest has just been diagnosed with a very serious lung condition which is incurable and progressive. She lives an hours drive away and I get up at 5.30am in order to get to her house as she goes to work early.

So I am there for my children when they ask and I always will be. I told myself years ago that I would gladly do this as my mother could not do this for me as she already had poor health when her first grandchild was born - she was sixty. I felt that I was 'meeting myself on the way back' constantly as I struggled with three children and a full time career. I feel guilty as I had told my daughter to 'read faster' as she did her homework because I had a stack of schoolwork of my own to do every night.

I feel privileged to now be in a position to help where I'm needed. I know this won't be forever as children quickly grow up and away - especially from grandparents.

My older daughter does not understand why she has to battle for help for her children. She thinks that when a child is identified as having additional needs there should be a straightforward pathway which automatically provides support so that the child can operate on an equal level to that of their peers. This is not the case.

I also have the worry of my husband's health - he had a major surgery and has a changed personality as a result of that.

Now I find I have unstable angina.

So I will get up tomorrow, carry on and hopefully get my DGD assessed before the next academic year.

Where is the help?

It's not surprising that some people reach their tipping point. My daughter has asked professionals for help and support and as pp have pointed out - it's not there.

It's very concerning - when people have gone past their tipping point, the neighbours report that they were such a lovely family ....

It's an unfortunate fact that every single time I have dared to think that I am actually very comfortable, content, happy - something absolutely dreadful happens.

In the last two years I have had to think about burying my husband as he was on the brink of death, three of my grandchildren have been diagnosed with serious health conditions. I lost my mum last year. I have health problems I could do without and sometimes I feel a bit down.

I was having a great time looking after my twin grandchildren this afternoon while their sister was at preschool when I got a phone call telling me that my other granddaughter had almost choked.

It's a wonder I'm not a nervous wreck.

You need to pace yourself. Make sure that every day you do something which is just for you, something that energises you rather than depleting you. I have multiple caring responsibilities at the moment and I have to make myself take time out, even if it's half an hour watering the garden (ie looking at my flowers!). Parenting - and in your case grandparenting- neurodivergent kids is a marathon, not a sprint, and you will be unable to support your daughter as much as you would like to if you don't safeguard your own mental and physical health.

No idea how that managed to quote the entire OP, sorry!

Are you one of those people on MN that click the unanswered button so you can be first in with a nasty response?
Just ignore this OP