Here some suggested organisations that offer expert advice on SN.
I feel like I am failing my son.....(5 Posts)
I post on here quite often about my just turned 3 year old son who was diagnosed with autism a few months ago. He is gorgeous and lovely natured and him and his twin brother are our entire world.
He is non verbal (lost his words at 19 months after major regression), but generally easy going until recently. Repetitive behaviours are vitrually non-existant, no routines or meltdowns, no behaviour issues at all. He is very gentle and affectionate.
The past few weeks I've felt more and more upset and worried for his future than ever before. A few weeks ago him and his brother caught a cold from a play centre we had been to. This disappeared after a few days and then a week later DS had diarrhea and an upset tummy. This whole time, he seems to have gone downhill alot. He has gone from being very easy going to grumpy and frustrated. He doesn't like me singing or reading his books to him anymore - he just growls at me, which makes me sad because these were things he loved to do together. This weekend has been the worst because we've had visitors and he just looked more severe than ever especially compared to his twin brother.
worried terrified about sending him to nursery, I don't know how he will cope. I can't imagine him going to school next year.
He completely ignores his brother and I feel heartbroken for him when he's wondering why DS doesn't return affection or play
He is non verbal and I can't imagine him ever speaking
Ever since him being diagnosed I have put so much effort into getting him the most help. I've started doing ABA myself with consultant supervision but feel like I'm rubbish at it. I'm now looking at hiring somebody to do it for me as I know I will blame myself if he never talks and doesn't improve He has so much potential and picks things up quickly but I just feel like I'm failing and ruining his chances.
I feel under so much pressure with this 'early intervention is best' stuff that I feel so stressed about messing up his life chances. I will never feel like I've done a good enough job...
I wonder if you need to scale back a bit and just enjoy yourselves. He's autistic, which by its very nature means 'disordered' development, you do need to stop comparing, which must be mega hard with twins. Maybe look for ways to find joy for you all?
I really love this blog
Thanks for posting that blog link Polter - it's both thought provoking and reassuring, especially after a day when one of mine's neurodiversity has made itself known at a family gather!
Laura hang on in there! I have 3 of my 4 DC on the autistic spectrum (though all verbal - mostly - one has selective mutism). Sometimes, yes, it is overwhelming, but other times I feel a real release of pressure and expectations in that my three will most definitely follow their own paths. And this is after I've spent years 'investing' in what I thought was going to enhance DS2's 'life chances' (higher education) but it looks like that was my route for him, but not his...
I feel like I have directly lived a lot of what you have mentioned here. DS1 also lost his speech around 19 months, as well as his gestures (waving, actions to songs, etc). When autism was suggested to me just after his second birthday I refused to believe it, as he slept well, ate well, was affectionate, etc... Then at 2.5 years old he stopped eating most foods virtually overnight, and we now have to use melatonin to get him to sleep. He also refused point blank to be read to for well over a year (I can now read to him from a small selection of books, which makes me happy!). He also will tell me to stop if I try to sing to him... He is still generally a happy boy, though his anxiety has increased with age, as has is need for certain routines, and his meltdowns. He is still loving and affectionate (well with me and DH, though he is improving with DS2 I also feel that sadness regularly when he ignores his adoring younger brother).
What I have learned in the last few years though is nothing stays the same. DS1 goes through negative phases, or regresses in some way, which make us wonder what on earth happened, then will do or say something out of the blue that seem to show a leap in development that is equally surprising.
He was preverbal at his 4th birthday, so attempting to make sounds to communicate though they weren't really intelligible, but now as we are nearing his 5th he doesn't stop talking and can be understood 90% of the time by a stranger (lots of echolalia, but is also starting to answer questions) and he loves to sing!)
I started aba just over a year ago, and like you tried to be the tutor (with a demanding baby to deal with at the same time..) To say I came close to a breakdown isn't an exaggeration, and we too decided to pay for a tutor for the few hours a week we could afford. I realised recently after watching our wonderful energetic bubbly tutor for a session that I needed to give myself a break, as I just wasn't the 'tutor type', which made me stop feeling so rubbish about myself! However, I use aba principles to encourage speech/communication every chance I get naturally during the day with DS1, which I believe has helped him without putting extra stress on me. If you want some examples please PM me, I'll be happy to discuss.
I hope some of my above rambling makes sense or might help you in some way. It's late and I'm tired but I wanted to answer your post as it resonated so much. Especially the feeling that you are failing your child/children. Please know you are not. You have researched, you are finding the best ways to help your child progress, and you will continue to do so. It can be overwhelming and bone crushingly/mind blowingly exhausting at times, as only parents of children with additional needs can understand, so be kind to yourself
Sometimes MN is SO unsatisfying. I wish we could meet and talk. My boys are 11 now. I'm not a fan of the desperate early cramming intervention. I'm a fan of NOT losing your childhood when you already have so much hard stuff to overcome.
EVERY professional we have dealt with is impressed with how well ds does. I basically just help him to be happy. Sometimes that's hard work for both of us. So I'm not saying we don't strain at the bits that inconvenience us, just that the motivation is to help him through, NOT fix him, cos he's not broken.
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