My toddler is probably SEN/Autistic and I need to get these thoughts out.

[Buttercupsandpoppys]

This is probably the wrong place to post this but my head is whirling and I just need a safe space to get these thoughts out.

I don’t want to offend/upset but I am just going to speak unfiltered/uncensored because I cant speak this freely in real life and I really need to get these thoughts out of my mind.

My gorgeous girl is 2 years old and it’s becoming more and more obvious that she’s autistic. My friend actually suggested she was when she was around 10 months old and flapping/rocking a lot but everyone reassured me that it’s normal infant behaviour they tend to grow out of.

My dd was delayed in many areas of gross motor skills, didn’t crawl until around 14 months or walk until 2 but she was okay in other areas. Shes been referred to peads and is under a consultant for the delays but I was hopeful that things would ‘get better’ and she would catch up. But as time has gone on it’s become undeniable she has autism.

She has meltdowns in public when overstimulated, stims and has little interest in other children. Watching her at playgroups and she’s on the outside on everything.

She is so loved by me, her dad and our families. I want the very best for her which is why it breaks my heart.

I have so many questions that no one can answer and only time will tell.

I know it’s not politically correct terminology but will she be high functioning or low functioning with a learning disability? How can I tell?! By when will I know?!

I work in adult services and a professional and I know what awaits her if she has learning disabilities and autism after me and her dad have gone and it’s awful. There is no protection and it doesn’t matter if she had millions in the bank for private care if there is no loving parent to manage/oversee it.

If she’s high functioning then I know she can lead an independent life and I can dedicate my life to ensuring she has the skills and coping strategies so she can go out into the world on her own feet.

I have some friends who have autism. They are professional, capable adults with partners and careers and mortgages etc. They have struggled of course but they can live independently and have a ‘normal’ life. Will this be my daughter?

Then I have my service users and my lovely younger brother whom my parents adopted who have autism and learning disabilities. They are at the whim of others. The ones without families or parents have passed are then at the mercy of the state and whatever government is in at the time. Will this be my daughter?

The not knowing is so painful. I can’t get to the stage of acceptance and planning when I have no idea what I’ll be working with or what to hope for.

Will she be in a special school thriving or in a mainstream school achieving qualifications whilst struggling socially?

Then I look around me and go to play groups and have met so many other mums with children with SEN and ND. Like literally every group at least 1 other mother has a child with ND/SEN either at the group or older and in school. So then I ask myself WTF is going on?! Why are there now so many of us?! Yes awareness is now there but c’mon! This common?! Really? At this rate then how can it be neurodivergent when a lot of the population are divergent? Then surely there’s no longer ‘nureotypical’ anymore as being divergent isn’t rare? Like wtf is going on? Why is this happening to our children? Why so many?
But that also makes me very hopeful as then the world will become more adapted for my DD and others like her and their life changes will be much improved.

There is no one on either mine or DPs side with SEN/ND. So how did it happen?
Was it the medication I was on in pregnancy? Why us? But then the spiritual/ philosophical side of me thinks maybe we were chosen to be her parents because of who we are. My parents adopted my younger brother with autism and LD when I was a teenager. So I learned so much about it and ended up in a specialist role for adults with needs. My whole profession and university education is based around that. Me and DP are a very stable and reliable couple with great team work. In a way perfect for a child with needs. Maybe this was suppose to happen as the universe knew we were somewhat equipped to deal with it?

I have no idea. We may never get answers.

It’s the ‘not knowing’ that kills me. Sometimes I think my DD will be fine and thrive. Then other times I hold her as she has a meltdown in public and I lose all hope.

I’m sorry for this rambling post probably full of typos and making little sense. I’m just thinking out loud as few so ungrounded at the moment about it all.

The not knowing causes me enormous amounts of pain too. My DS had a traumatic birth and midwives told me only time would tell if it had had an effect. I worried so much in those early days and weeks. Then it faded. Then concerns started to pop up by a year. Now he is 11 and in an autism specialist school. He has specific learning difficulties but is cognitively able. I still have absolutely no idea whether he will go to uni, have a professional career, a partner, a house and a family, never work and live a sad lonely life with intermittent intervention from social services or mental health services, or whether his rages and paranoid thinking will get him into trouble and he’ll spend his years in prison.

I so desperately would like to know, which is crazy, because with any child you don’t know whether they will survive to adulthood, be successful, whatever that is in their and your eyes, or have massive misfortunes in life.

Get rock solid wills in place. Get lasting financial and medical power of attorney in place for her, if she will let you, when she is 18 and try and get additional people other than just her parents on this. Set up a trust so that her inheritance is protected. Find a lawyer who properly understands the issues and can advise you knowledgeably about trusts for vulnerable people and which one would be best in your situation. Run a mile from those that seem to think trusts are just for very rich families. It’s not going to solve the problems you envisage but it will help a little. Try and make sure there are lots of people in her life who care for her and would look out for her in your absence.

Autism is often diagnosed age 5-7 because that is when the child starts school and when they leave play-based Early Years learning for more formal KS1 work - if either of these new stages causes an issue, it then shows itself.
Going to secondary has a similar effect.
A child who has a slower rate of development also shows up more as time goes on because the others start to pull ahead so the gap between them is increasingly obvious - at age 3 everyone might be close enough to be within normal variation of each other, but by age 6 the delayed child has started to be outside the "variation" bubble around the mean.

I echo @Lemevoir that 'low' and 'high' functioning aren't really helpful.

There are so many unknowns you really just don't know how things will be. Much of this you have no control over. All you can do is push hard for as many assessments as possible without delay so you can better understand their needs and communicate those to others/find the right settings etc. Understand how the routes to assessments, EHCP's etc. work so you don't get fobbed off. Start thinking of what your work life will look like if your child needs more support. Think about what support you and your family will need. Make sure you have good wills and start thinking about who you would have as guardians etc.

Most of all, this is a marathon not a sprint. I didn't take care of myself as well as I should (neglected myself to take care of my son in some ways) and unfortunately now have major health issues (including cancer). These health issues may or may not be connected... but I would say prioritise your health (physical and mental) and your fitness so you can advocate for your child for the long term and live each moment, day rather than obsess over the future.

The not knowing is really hard. My daughter was diagnosed at 3 and is more of the spiky profile type so she has no learning difficulty and is quite bright and verbal, but has massive social and emotional difficulties. I think it's 50:50 whether she could either end up finding a niche career and living independently, or end up in prison because of a violent meltdown.

However more to the point of the discussion, in my area the learning disabilities care is actually pretty decent . The clients live in supported accommodation and it is seen as being a more desirable type of care work (the elderly care sector definitely has more recruitment and retention issues). The carers are paid an absolute pittance but try very hard. It's not the life anyone would choose for their child but there are examples of good care out there.

Yes, there are some very happy disabled adults out there living full and happy lives.

I've just come back from my son's parents evening at his special school and have been so happy to see such a wealth of wonderful learning experiences that he's had. His teachers and TAs are incredible people and he thrives in their care.

The most important thing is to focus on getting the Reception year sorted, in a setting that will suit your child. If your child is behind their peers by two years or more then getting an EHCP sorted will be absolutely vital, and it might be an idea to already be casting a curious eye at local special schools and reading their admissions policies.

I spent an awful year sorting DC's EHCP while juggling a newborn, applying to tribunal, gathering reports, submitting reports to tribunal, visiting schools. My head span. But the result was that my son started school in the school that suited him best, and he's made progress ever since.

Many parents are unaware of the policies and processes that come into play when children with possible or actual SEN begin school, and some wait for the school to make the move with regards to support plans. This just isn't enough for a child with significant SEN. They need a full plan in place that begins on their first day. You are probably well aware that this stuff doesn't come to you, you have to actively make it all happen.

It arduous and dehumanising. Exhausting. But the more you put in at the start, the easier you make the road ahead.

I agree with the posters that my views maybe jaded through work but I don’t think so.

I’ve worked with vulnerable adults for sooo many years. So I reviewed countless care homes, supported living places and placements including day services over 3 parts of the country.

There was some fantastic ones and some terrible ones that were shut down. But as fantastic as a placement is today, it can turn horrendous within a few short months. All it takes is a manager retiring/leaving or the company changing hands etc.
Although if there is a family member such as a sibling, niece or nephew etc that is very hands-on/involved that is a massive safeguard and can shield from a lot.

Me uncensoring myself and not being politically correct here so don’t shoot me here. But I see all my service users as the world’s innocents. I just wan to scoop them all up and protect them from the dangers of this world and keep safe and protected regardless of family/politics/budgets. They deserve the best of everything. They’ve done nothing to deserve to have their lives depend entirely on the good mood and caring nature of others. It evokes something in me similar to when you see a small child unable to defend themselves. I think it stems from my mum adopting my disabled brother and his vulnerability.

Thats likely another reason I find this all so hard. It’s like my professional and personal world colliding. If I felt strongly about safeguarding at work before you can imagine that times 100x now. I take no prisoners when it comes to good care.

But tbh you’re all correct that there’s no point in me worrying about something that may never happen. I need to focus on the ‘now’.

I was watching DD earlier playing with her cuddly toys. She was lining them up in front of the mirror and then dancing as if performing for them while stimming and finger flicking and singing. It made my heart swell. I said to my DP I wouldn’t change her. Despite the worry and heartache I wouldn’t change her. Taking away the autism would be taking away her and I love every inch.

❤️

OP I have one son with ASD (known from when he was a toddler), who's currently away at university studying engineering. My other son was the most lovely, easy going, clever, talented, sweet natured boy, who's gone on to develop a severe mental illness (bipolar 1 & psychosis), and may never live independently or work.

I allow myself to have thoughts of the future, but not very often as there's nothing to be gained from it. All parents whose children have disabilities and lifelong conditions go through those torturous thoughts. I really encourage you to take things day by day, and celebrate everything that's lovely about your child.

@Buttercupsandpoppys how is your daughter getting on now? I cried a lot reading your messages especially when you said about not take away autism bus use it would take away parts of her, I feel exactly the same as your original post. So I just wondered how you and your little girl are getting on now ? ❤️

Me, my mum and sister had a feeling my nephew was autistic before he was 1. By the time he was a toddler, he had delayed speech and didn’t utter a word until age 4 (he could spell long words though). He would have huuuge meltdowns when overstimulated or because he didn’t want to wear certain types of clothes. It was really difficult for his mum and dad. But after he turned 4, things got a lot better, he learned to talk and the meltdowns became less frequent. He was diagnosed as “high functioning” and now, aged nearly 7, he’s very similar to other kids. He still has sensory issues and prefers quiet environments but he’s sooo much more sociable, has a lot of varied interests and is pretty smart. I wouldn’t lose hope.

I am in your shoes currently! My son at 2 displayed autistic tendencies, non verbal and delayed in all areas. I explained my concerns to the health visitor first, nursery were excellent and pointed out their concerns. This led me to a service called Portage, which was amazing. 12 play led sessions based on assessing his skills and offering tons of support and help. I was then told to make a neurologist appointment, who assessed and said he has a global delay in all areas and likely autistic. We are currently on a waiting list for an autistic appointment. SALT assessed and diagnosed non speaking.

all of this was so hard to digest, but the support I have received has been amazing. Also I applied for an EHCP based on these assessments. He has just been awarded this. Which is amazing, means he will have funding in education until he is 25.

what does the future hold?! Every time I think too closely about that it fills me with anxiety, will he ever be independent? Will he speak? Will he recognise his peers? Who knows, but if I stay in the present, he is a happy boy, a huge personality, he uses non verbal ques to get what he wants! He is loved, he is in a nursery which understands his needs.

you are about to embark on a rollercoaster journey it’s been the toughest time of my life, even family don’t understand and often say the most unhelpful things. But you get through it, try to stay in the present and get the support you need x

I have some insight for you as my son is nearly 14… he doesn’t have autism but was delayed from birth and now is a teen with learning disabilities and attends a Sen school..

I will say I put my heart and soul into pushing him to do everything, gave up work to be with him and make him the best version of himself because the thing that kept me awake at night was what will happen when I’m gone…

so he is now in year 9 and is way better than predicted and I’m sure that because of what I did.. I treated him as if he were NT and he knows wrong from right , doesn’t have meltdowns, is kind , empathetic and very liked by everyone he meets.

so whilst you can’t control the future you kind of can so don’t accept what any doctors tell you and make up your own rules and journey!

no one was going to tell me he wouldn’t walk and I spent hours and hours doing physio with him and making him walk with his frame etc and everything we have tried we have overcome !!!

i would start applying for an Ehcp now as you will need it for any Sen school and apply for dla and carers as soon as you know as this will help you pay for any therapy the NHS doesn’t .

best of luck