Son newly born with autism

[Nad4444]

Hi I'm a mother to a 5 year old boy has recently been diagnosed with Autism. He goes to a special needs school hes very good at numbers and gets very emotional when his routine changes. He is very loving and likes hugging people who praise him. I would like to talk to other mums who are in a similar position to me, to learn and support each other.

[Jofisher]

Hi my son is now 27 he has multiple health issues as well as Autism, my son is now in care places that supported me were carers association social services Autism society other parents I learnt a lot from portage and challenging behaviour team. I’m not sure how helpful I can be but happy to answer any questions.

[Nad4444 in reply to Jofisher]

Thank you for sharing your story. I'm just looking for friends in similar position i don't know anyone who going through the same thing. I sometimes feel lost when my son has a meltdowns. I suffer from depression and anxiety and I often blame myself.

[Jofisher in reply to Nad4444]

Bless you some of these organisations will give you access to other parents so do give them a try. Mums are really good at blaming themselves and to be honest it’s not helpful your doing an amazing g job I’m sure under extremely difficult circumstances. What about mencap helpline as well and there’s a parents group as well call them to find out more. All the best

[Nad4444 in reply to Jofisher]

Thank you yes I will try mencap. My CBT therapist did suggest this when my CBT session finished.

[Jofisher in reply to Nad4444]

I don’t think parents often recognise that we all go through a grieving process regarding the child we thought we had or would have and the child we do have if this makes sense. I think it’s really important to recognise this as I believe it helped me. The looses for me I know continue as what could have been isn’t the case sadly. Don’t get me wrong I adore my son and he is who he is but it’s been extremely hard at times for us all.

[jazzy15]

Hi, I'm not in the same position as you but very similar, I'm just a few years further on.

If you (or anyone else that reads this) ever wants to ask anything, maybe let off some steam, vent, or maybe just say hello, this is the basics about my little family unit, so you know a little about me.

I have 3 children all ASD.

My youngest 15yrs is the more severe on the spectrum, like your son good with numbers, anxiety with routine changes, and many more little quirks. She has quite a lot of ongoing mental health & physical health conditions.

My older two are coming up to their 30s.

One last year moved 250miles away, back to where we used to live.

The other my eldest, lives close by and has 4 children of her own.

She was 18yrs old before I realised she too was on the spectrum, but she was in denial until about 1yr ago.

Her youngest are twins, 2yrs, both are currently beginning the process of referrals, assessment, etc etc.

Her eldest is diagnosed with SPD he has some strong ASD traits.

The middle child, we were convinced she was definitely not on the spectrum, until she started school, then it became very obvious she too was on the spectrum.

It was a few years ago, that my own childhood began to make sense, and then my issues as an adult navigating their way through life also became clear. I too suffer anxiety

All of us were and still are learning our way through this.

Its important to know, it's never your fault, there is no blame.

Meltdowns like many things are so difficult for us as parents, we feel like we want to make it better but can't.

What we can do though is learn about them and concentrate on managing them. Learn the triggers, recognise what eventually calmed things down etc etc.

The biggest bit of advice I gave my eldest for her children was....

"your diary is your best friend, it's this that helps you recognise patterns, problems, fails & success, and is the most powerful bit of equipment when you see professionals, go through assessments, see teaching staff etc"

Someone else has mentioned portage, they weren't about when mine were young but my eldest is with them for her twins, they are brilliant.

Join NAS, Facebook groups, anything you can find.

Be kind to yourself x

[Nad4444 in reply to jazzy15]

Hello

Thanks so much for sharing jazzy15. Its nice to read others life experience. I also have a daughter who is 15 months she doesn't show any signs of ASD she gives me lots of eye contacts and just seems just happy and playful and loves to play with her brother and follows him around. My son doesn't seem to always want to be around her.

I ask the peadrictician whether his ASD is mild or severe but she said they stop doing that years ago.

His communication has improved since he been going to a special need school. A transport bus comes and takes him to school and back. I live a block of flats and I always feel we are being watched by the neighbours. I thought maybe im paranoid but recently been told someone complain about the bus reversing in our drive. So I have to meet the bus 5 minutes away. I have complain to the council on our unfair this is and my reasons why. I'm waiting for a response. I feel there are always issues and sometimes I just can't take anymore and just burst into tears. I'm on antidepressants but choose not to go on the higher dose because of the side

effects. I love my children but I feel let down my people judgement and comments about my son from his school, previous nursery and now this. His previous speech and language therapist said to me once" he might be able to say the word dog but doesn't know that a dog is a 4 legged animal " i said yes he does know. I was so upset that day.

[HolisticMum]

If you are on Facebook, I watch a site called Let Us Communicate. There's a lot of parents on there who have autistic children and some really good info from other professionals. Also a nutritionist once recommended a book Gut and Psychology Syndrome by Dr Natasha Campbell-McBride (revised edition). Which does explain how nutrition can help. Hope this is of some use to you. All the best.

[Nad4444 in reply to HolisticMum]

I'm on Facebook I will check it out thanks. I feel these professionals just think all special needs children are the same and are stupid. I will fight and yell at whoever look down at my son as he's mine and he just a child who can't defend himself so I will do it for him. I hope society change for the better and accept people for who they are without judgement.

[HolisticMum in reply to Nad4444]

Forgot to say, the book I mentioned, you can get it on Amazon.

[Nad4444 in reply to HolisticMum]

Thank you I will look it up

[HolisticMum]

It is most annoying when these 'professionals' like Speech Therapists say things like that as they just put the children all into one category. My eldest son loves a ball and from the age of 2 if we said bounce, twist, roll it etc he knew what those words meant. I relayed this to a therapist once and all she said was "How do you know"?. I thought it was obvious, as we asked him to do those tasks, he did. Sometimes the therapists have tunnel vision and can't move away from their tick boxes. People with special needs never get any credit for the amazing things they can do and it is such a shame that therapists cannot learn from those children like we have done over the years. Our boys have been an education to us. I love them so much. Always question the Authorities.