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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Son diagnosed with autism

32 replies

Soverysadandworried · 20/08/2023 19:49

I’ve name changed for this as I’m certain I will end up with lots of negative comments and could be outing but I need to be honest and just pour my heart and inner thoughts and worries out somewhere.
my son is 3 and has just been diagnosed with autism and ADHD. I am absolutely distraught. I love him and his beautiful smile and laugh so much and feel so protective over him, but I find parenting him
exhausting. He’s always been a terrible sleeper, up crazily early every single day (4am!), very impulsive and lots of meltdowns, just feels like every single fucking thing is hard and I spend so much time repeating myself/chasing him, and feel
totally overwhelmed at all the other shit I have to do that never gets done while I try to help him and engage him and it all feels so pointless.
I find the looks he gets hard, not for me but because I hate the idea he will have a lifetime of them. I find it heartbreaking seeing how different he is from other kids and how even at their young age it’s like they sense he’s different and don’t include him.
he goes to preschool. He seems to like it but from what I gather he plays alone most of the time which kills me.
people seem to try and put a positive spin on how autism is a superpower/different not less etc etc etc but all I see is a hard road ahead. I just feel so sad and despairing and worried. Hoping one day I don’t feel this way but now, right now, I am devastated.

OP posts:
Worriedmotheroftwo · 20/08/2023 23:47

Oh I'm so sorry things are so tough for you right now. My son is, I'm pretty sure, about to get diagnosed with autism (assessment in a few weeks). I don't mind the label (I'm pretty sure I'm ASD too) but his struggles are breaking my heart. I love him SO much. If it's any help I'm a teacher and I have taught loads of autistic children at my (selective, academic private) school and they've been brilliant. I have hope that, despite the struggles, my son will have a happy and fulfilling life.

Worriedmotheroftwo · 20/08/2023 23:48

PS you said you got a diagnosis for ADHD for your child at 3 years old?? I was told i couldn't have my son assessed for ADHD until hes 6... have I got this completely wrong?!

Kstar7 · 09/09/2024 20:44

Hi op, just wondering how you're getting on? How is your little son doing? Going through similar thoughts as you did in your posts....

Sjbythesea · 09/09/2024 21:11

My son was diagnosed with ASD age 4 and I can remember feeling exactly the way you do. I was scared stiff thinking about his future and how he would manage and be.
The diagnosis enabled me to get him additional help and 15 hours a week with a teaching assistant. Year on year he progressed till he decided that he no longer needed the support of the assistant and myself and his school agreed. He is now in year 9 of secondary school and is doing really well. My advice to me looking back would have been to stop worrying about the future, I know it’s easier said than done but just try and focus on now and get all the help for your son that is available. All the best x

Crazycatlady79 · 09/09/2024 21:41

My 6 year old twins are AuDHD. I am, too.
I've never felt any grief nor devastation for how either are, probably because of me have the same diagnoses (although all of us have very different support needs from one another).
I do feel for anyone who feels any sadness etc regarding the diagnosis. For my part, I couldn't have anticipated just how challenging Twin 2 would become and just how fucking relentless it is with zero input from the father and no family left.
BUT...despite how advocating on their behalf nigh on destroyed my mental and physical at one point, seeing how far they have come is truly amazing.
I hate anyone referring to ADHD and Autism as something akin to a superpower. It's not all negative, but it's not fricking stardust and rainbows, either.

Lostmum1906 · 09/09/2024 22:11

Op have you tried magnesium for your ds , my friend uses Calmify and swears that it has led to deep sleeps for her ds who is asd and 2.8yrs old

BeNavyCrab · 09/09/2024 23:13

I'm a mum of two ND kids who are now young adults. My oldest DS was 3 when he was first diagnosed so I have been where you are. Our DD was born four years later and was the most awful sleeper, to the extent that a midwife in the hospital said "I now understand why some mums are driven to murder their kids" 😱after she'd screamed the hospital nursery awake all night. I myself became seriously disabled during the birth of our DS and wheelchair bound after DD, so it was very challenging to have children with extra needs.

You definitely need to sit down with your husband and work out a plan to allow you time off and how to balance the needs of everyone in the family. Accept that he won't do it exactly the same as you will but that's also a good thing. Your kids will get different things from both of you and it's important for your DS to be able to bond with both adults in his life and your other child will need some time where they have got a parent who gives them their full attention.

Read up on autism and the different ways to communicate with your child. Meet other parents in a similar situation and find out what works for them. There's not a one way or one answer as all people with autism will be different but there are things that are common and it can make the world of difference. For example we found that an egg timer was useful for stopping fighting over toys because they could predict when they would be expected to exchange/ give it back. We also would tell them a few minutes in advance that we were going to leave or finish something so they would be prepared for the event to happen, rather than it suddenly be sprung on them.

Both of ours would want to know what was going to happen before we went to somewhere strange or different. For example going to the dentist. We would talk about what it would look like, how they would be expected to behave, what the dentist might do and why we were going there. We would role play lying back on my lap, putting sunglasses on and looking at their teeth with a torch, to familiarise them with the idea of being in the dentist chair.

As you discover what upsets your child, you will find ways to reduce them or help them cope. You will have conversations with you DS and I am very certain that he's understanding much more than it appears he is from his responses to you. At 3 our DS didn't say anything at all, no noises when playing and I was worried he was deaf. When he started talking I thought he didn't understand much at all but I was completely wrong. You will have conversations about diverse things and in great detail for things that interest them, be prepared that it won't always be at the most opportune time for you but it's better to be available for them than not. It can be virtually impossible for them to wait to tell you something or lose the idea of what it was.

For sleeping our DD was very difficult most of her primary school years and still has a very strong "night owl" tendency even now. We found having a weighted blanket to be really effective at helping her to sleep longer and more deeply, though it's got to be the right weight in relation to their body weight and I'm not sure how old they have to be before they can use one.
We also used aromatherapy oils and a bed time routine to get her into the mindset of getting to sleep because she really struggled with getting overtired and then highly emotional and unable to switch off.

In primary school years both of our DCs would be fidgeting and finding it difficult to sit still, so they used tangle toys which they could use without disruption to the rest of the class. Having something to manipulate and get sensory feedback from helped to focus their mind.

Regarding bullying, unfortunately it's going to happen. Kids can be very cruel and pick on anything different but a good supportive school will deal with it. Some of it our kids didn't notice, so it wasn't a problem to them. They will find friends in school and play together. Ours both had smaller groups of close friends who they still are friends with. They also have a high proportion of friends who a neuro diverse and can communicate brilliantly with and are very supportive of each other.

Both of them are happy young adults who've done very well academically and been/at university. There are things that will always be more challenging for them but they have found ways to cope with some of them too. So there's plenty of good times ahead for you and your family.

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