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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To look at pictures of him and imagine...

59 replies

Lostlostlost3 · 19/01/2022 20:34

Name changed and expecting a bit of a telling off. I need to get this off my chest.

Life is hard at the moment. My much loved and longed for son is autistic and we are
all Struggling. He is unable to speak or communicate well, is dysregulated and we've just had another horrendous bedtime.

I took the most beautiful picture of him earlier and as I always do, I look at it and imagine what life would be like if he could talk to me. If he didn't have communication struggles. The conversations and laughter we would have, I'd finally be called mama. He'd say good morning and good night to me, give me a hug and say hi mama. It's breaking my heart and I am just broken. I don't know how to help him. This isn't what I wanted for him and us.

OP posts:
EIIa · 19/01/2022 22:25

Op, the day my five year old spoke five consecutive words - not even a joined up sentence mind - I burst with pride and called my mum instantly. He has massively improved to the point that he is able to take the lead in a school play aged 9. I realise that this is a dramatic improvement and possibly unusual, but it’s so hard when you’re in that zone and the future seems bleak.

I know this is probably irrelevant to you but there are a few things that I wasn’t aware of when my son was three, which I would have really helped me.

At three he couldn’t sleep eat poo or speak and I was trying to plod away with appointments and encouragement and desperately hoping that things would improve. But what I didn’t know is that improvement in one area gradually led to improvements in all areas. For us, melatonin meant he was better rested >
Less anxious > able to cope better > eating better > pooing better.

Also: as soon as he was able to speak more, he could then explain if things bothered him and the tantrums and stimming subsided. This happened around age 6

For the speaking side, I basically spoke and sang to him non stop, it was completely exhausting. I put him in the front seat of the car (we live rurally so spent quite a bit of time in the car) and basically sang and chatted to myself etc. We tried SALT but it wasn’t effective.

I gave him a probiotic which seemed to have an effect on his socialisation almost straight away. I think when your son is older,
it might be possible - he was 6 when I did that. By that I mean he went from running repeatedly around the playground to NOT running away if another child came near to him, it really was baby steps.

Whenever he had a craving for anything remotely acceptable, we just went with it.
I used to make him ice lollies out of fruit n vegetable juice just to get the vitamins in. You can hide carrots in apple juice for example. As he became better at communicating I was able to explain about vitamins and health to him. When he was 7 I sent him in a cooking course and it really helped with his inability to deal with new food.

How is his sleep? Does he take melatonin? The minute my son started on that everything gradually improved. We tried everything but ultimately melatonin + co sleeping worked the best. We have indulged him on the stuff that matters like comfort at night time or his need to sit in shopping trolleys etc.

When my son was three, my life was so so difficult. I don’t know what will happen with your son as he develops but he is still really young, autism really isn’t linear and things can improve.

Embracelife · 19/01/2022 22:30

Buy recording buttons fir favourite things or people
Taruor Recordable Answer Buzzers Small Size Easy Carry Voice Recording Sound Button for Kids Interactive Toy Answering Buttons Orange+Pink+Blue+Green www.amazon.co.uk/dp/B09KGW5QQP/ref=cm_sw_r_apan_glt_i_X2H88SF98S7B54C5KZV6?tag=mumsnetforu03-21

Use ipad speech apps
Teach h signs
He is only three
He can learn to communicate
Print photos of family can he select mummy ?

3Daddy31982 · 19/01/2022 22:42

I've three children with ASC. My eldest has severe ASC. Has he his own sensory bedroom. I find this really REALLY helps. Is he on the sleep meds?

Merryoldgoat · 19/01/2022 22:48

@Lostlostlost3

My boys are quite different - older is largely not very dissimilar to most NT children but the areas where he IS affected it’s quite marked. We generally have a good relationship but I find the repetition of things he doesn’t understand extremely irritating. He seems rude at times which I pick him up on and he cannot seem to learn not to make loads of noise.

However he’s affectionate, kind, generous, funny and very bright. He taught himself to read before he was 4 and was speaking in proper sentences by 2. He’s 8 now and his reading is probably the best in his year. If we are having a good day it’s superb. On a bad day I feel broken.

Interestingly the younger one is like sunshine and much easier in some ways but he’s like a puppy - he climbs, jumps, leads with the head, no sense of danger and not verbal so I just spend time worrying about what will happen to him when I’m gone.

But sometimes I sit on the sofa and the younger one comes over for a tickle and the older walks me through his Minecraft world and everything is perfect.

It’s just very hard some days. Not understanding what he wants is very upsetting.

ShaneTheThird · 19/01/2022 22:53

Oh op huge hugs that's so tough. Not my child but my dnephew is autistic, non verbal with PDA and complex special needs. He's six soon and is only just now at the stage of a four year old in development which is a massive improvement from a year and a half ago when he was at 9months mental development stage! My dsis has huge struggles and often feels pretty lonely that people don't understand her child and how difficult he is. She is lucky he gave her his first ever hug last year and she had to hide in the kitchen to sob. You sound like you are doing a fantastic job. He is lucky to have you as his mama.

Lostlostlost3 · 19/01/2022 23:03

@Merryoldgoat your younger son sounds much like my own! He can be an absolute delight.

OP posts:
Lostlostlost3 · 19/01/2022 23:05

@EIIa @3Daddy31982 he generally sleeps well. Loves bedtime and our routine but goes wild as soon as the light is turned off. Once asleep he wouldn't wake up if a herd of elephants went past. I do feel that his struggles are mainly due to sensory processing issues, we have plans to access OT in the future but have just been rejected for NHs help as he isn't severe enough apparently.

OP posts:
roseapothecary · 19/01/2022 23:06

Your DS sounds just like my 3 year old. hugs I know how hard it is.

Lostlostlost3 · 19/01/2022 23:08

@Embracelife such a good idea. Thank you!

OP posts:
NewtoHolland · 19/01/2022 23:10

Sending such a huge hug and wishes of comfort for your aching heart.
Of course it's natural to wish and hope and pray to be able to hear him talk and communicate..I really hope it happens for you.
Have you been offered the early Bird program? It's something our paediatrician referred us on to and it's been helpful, from the Autistic Society and here it's run by psychologists, I think there are different versions for different ages and presentations.

Rightyouarelove · 19/01/2022 23:19

No advice or experience, but just wanted to say that I’m so glad you posted this and shared some of what must be incredible (and totally reasonably) painful for you. I can’t even imagine your grief for the life you hoped for combined with the general difficulty associated with eating, transitions, communication. You sound lovely and caring and your son is lucky. I hope someone is looking after you. Feelings are just that, feelings. A feeling is never bad and it’s always better out than in x

Lostlostlost3 · 19/01/2022 23:21

@NewtoHolland that programme looks great and I've found one in my area. Thank you for sharing.

OP posts:
AliveAndSleeping · 19/01/2022 23:26

It must be hard op and you should be allowed to say that. You obviously love your son very much but that doesn't mean it's not hard. Be kind to yourself. Huge hugs.

Lostlostlost3 · 19/01/2022 23:27

@Rightyouarelove thank you. I've had a good cry at all of the responses and am feeling slightly better already. It's comforting to know I'm not alone in this although I wouldn't wish this suffering on any other parent.

OP posts:
BringYourOwnBoris · 19/01/2022 23:39

Oh OP, that sounds so hard.
At 4 we were totally reliant on PECS symbols for communication.
Then one day, in speech therapy he blurted out his first words "I dont like you speech therapy lady".
A whole sentence!

Lostlostlost3 · 19/01/2022 23:42

@BringYourOwnBoris that is excellent! What a start to speaking. How did you get started with pecs?

OP posts:
JugglingJanuary · 20/01/2022 00:05

(((HUG)))

You wouldn't be human if you didn't think about how different life should have been. It's normal to feel 'broken' when you've dealt such a lot of worry!

My friends daughter spoke her first words when she was 12. 'I'm not getting on this bus, it stinks!!' Not something most parents want to frame, but you know...we both have it printed & in frames in our houses! You take the wins where you can!

A lot of people don't understand how bad it can be!

My godson had an accident & as a teenager had to learn how to do everything all over. From breathing onwards. He came out with some really charming turns of phrase when SALT was dire...still words are words 🥴

I hope you find some things that help him to move forwards or at least bring you some relief.

Lots of us always around when you want to vent!!

PinkSyCo · 20/01/2022 00:16

Oh OP you’ve just made me cry, maybe selfishly because I am 99% sure that my toddler grandson is autistic, and I love him so much and know that will never change no matter what, but your post has just made me really sad for my daughter and her partner that they will no doubt someday feel like you.
It also makes me very sad that you felt you had to change your name. You are allowed to feel sad, your feelings are perfectly valid and you should never feel ashamed of them xx.

oncemoreunto · 20/01/2022 00:18

OP you absolutely shouldn't get told of.
Grieving for the life you thought you would have is totally understandable.
Wishing your dc and yourself didn't have to struggle is more than okay.

Be kind to yourself, it sounds as though you are very kind to your dc.

SquarePeggyLeggy · 20/01/2022 00:23

I’m so sorry. My son is on the spectrum, nowhere near as seriously affected as you describe. I feel as you do, I feel envious of parents with more straightforward kids and exhausted and sad and hopeless.
I can’t imagine the pressure you’re under and it’s ok to feel broken. It is incredibly difficult. Sending empathetic internet hugs.

Lostlostlost3 · 20/01/2022 00:26

@PinkSyCo your daughter and her family are on a hard path. She's sounds lucky to have you. I'm fortunate that we have supportive grandparents on both sides of our family. I feel immeasurable guilt that my son has never said grandma or grandad and sometimes doesn't even acknowledge them (unless he wants something, he's not stupid, he knows where his breads buttered Wink). I know how hard it is to connect with him and worry that they feel the same. Gosh, it's just mighty painful. Wishing you all the very best Thanks

OP posts:
Zombiemum1946 · 20/01/2022 00:42

You're not the first or last to feel this way. My parents were the same for a different unseen disability. You'll get past this. Please contact support groups, it made a big difference to my parents.

PinkSyCo · 20/01/2022 01:01

*I'm fortunate that we have supportive grandparents on both sides of our family. I feel immeasurable guilt that my son has never said grandma or grandad and sometimes doesn't even acknowledge them (unless he wants something, he's not stupid, he knows where his breads buttered wink).

Aww OP my grandson doesn’t acknowledge me either (even though I look after him 3 days a week while parents work), but I would hate for his parents to feel guilty about it and you shouldn’t either. I get my reward from having him to love, I don’t need him to show it back and I’m sure your parents feel the same. It’s a lot harder for you the parents of course, so please try not to feel guilt on top of everything else.

BlankTimes · 20/01/2022 03:43

Loves bedtime and our routine but goes wild as soon as the light is turned off

Could you get a slow acting dimmer-switch instead of just an either/or light or dark situation? Like one of those daylight alarm clocks in reverse. There must be something on the market that does that.

This is a good guide to sensory issues.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

Are you familiar with the OT Toolbox site? Most is aimed at older kids but if you find one or two things that may help, even if that's just to help your understanding, it's a good start.
www.theottoolbox.com/

If you apply for DLA, that can help with the cost of a private sensory OT .

SpidersAreShitheads · 20/01/2022 04:52

I've got autistic twins, a DD and a DS. My DS was diagnosed very young, needed special school and aged 12 years old now, he's still in nappies. Has a variety of quite substantial needs. Similar to your DS, he was non-verbal for a considerable time. I remember the head banging and self harming very well. It was an awful time. He was also diagnosed as having a sensory processing disorder, and dyspraxia - all pretty common things that go along with autism.

DD is different, not diagnosed until she was 10, flew under the radar. When I pushed, she got seen by SLT and paediatrics and they were shocked at how she'd been missed. Her receptive language was around a 6yr old - but school hadn't noticed. Girls can mask unbelievably well. She has a second, stand-alone diagnosis of language processing disorder alongside ASD. I suspect she also has ADHD, female inattentive presentation so again, missed. Sigh.

You've had some amazing advice on this thread. And of course it's hard. It's a huge adjustment. But what I would say - in the gentlest possible way - is that your DS is so very, very young still. Try not to hyper focus on the things that you don't think he'll ever do because - as I know from personal experience - our lovely children often defy predictions. Not speaking at age 3 isn't unusual with autistic children. Sometimes things just develop at their own pace. And if he is still non-verbal in another five years, there are lots of ways to reach him and communicate.

There are so many things that can and do help. The fact he sleeps well is an absolute godsend because sleep deprivation makes everything harder.

We absolutely relied on photos and PECS for years but found they could sometimes cause more problems which we didn't anticipate. So, for example, the dinner picture showed a plate and food - but I didn't anticipate that DS would then be expecting to get the food on the plate (it was sausage and mash and I dished up pasta). Cue enormous meltdown. Took me ages to figure out what was triggering it. Small things you'll just pick up as you go along for your child.

Anyway, as part of all of this I have discovered that actually I'm autistic and have ADHD myself. Obviously, I'm very different to your DS but I can tell you that things not being predictable don't feel "safe" and make me feel anxious. Unexpected noise make my head feel too busy and it's uncomfortable. Lots of things going on is overwhelming at times and makes me want to hide. I can't always figure out what to do, even when it's obvious to other people (Tesco changed their self-checkouts near me and I couldn't understand where I was supposed to put the basket - there was just a weird hole).

At age three, all of these types of feelings are just too much. Your DS can't identify what he's feeling and why, so it just feels frustrating. Add in the difficulties with communication and that's where the banging his head etc comes in. Frustration, anger and feeling overwhelmed.

Space. Time. Predictability. Preparation. Routine. Managing stimulation. All of these things will be your friend and help your darling boy.

There are lots of us out there who have/are dealing with exactly the same issues as you, and there are some fabulously creative solutions which might help you. Connect with local SEN parents - they will be your tribe and support, in a way that someone who hasn't been through it can't (despite their absolute best efforts and intentions).

Allow yourself to grieve and adjust, but try not to get too caught up in the "he'll never do...." thoughts. He's very very young still. You might be surprised at what the future holds. I'm almost 10 years ahead of you with my 12yr old twins and I never would have expected to be in such a good place with them now. Those early years were so bloody hard. Hang in there.