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The first day of the rest of our lives

(18 Posts)
Laurajay84 Thu 05-May-16 19:05:12

Today I am feeling the happiest I have felt in the past 18 months - I feel like a ten ton weight has been lifted off my shoulders. Today DS, 2 years 11 months, was diagnosed with autism and it feels like we now begin the first day of the rest of our lives. Now I can work on getting him the help he needs to become even more amazing than he already is smile.

We have known that something was not quite right when he had a major regression at 19 months old. Back then we were terrified of what life might hold for him but ever since he has made so many strides forward and continues to do so to this day.

I'm not expecting a lot in the way of help from the NHS. We were offered an ASD parenting course and four(!!!!) sessions of a stay and play toddler group. Shocking really but I can't say I'm surprised hmm. No speech therapy offered, nothing. It seems like we're just given a diagnosis and then meant to just hope for the best and be on our merry way with no early intervention offered whatsoever.

Anyway, tonight I will truly relax for the first time in 18 months. Tomorrow, however, the hard work really begins.....

zzzzz Thu 05-May-16 20:36:25

If it helps mine is now 11 and I really believe that environment and experience out way therapy. Not everyone is convinced early intervention is the holy grail.
Take lots and lots of photos.

Laurajay84 Thu 05-May-16 20:43:25

zzzz I'd be interested in hearing further any thoughts and suggestions you have. What I should be concentrating on, etc,

PandasRock Thu 05-May-16 20:44:36

Hello smile

My dd is also 11, and it has been a long 9 years! There's been ups and downs, but I can say that most of the downs have centred around outside sources - fights for provision and education, statement (now EHCP) etc.

We too were given the diagnosis, and then sent on our merry way. My non-verbal 2 year old was signed off from speech therapy, never got any OT, despite serious motor issues (has still never had any NHS OT!) and we got put down for a place on an Earlybird course which came up almost 2 years later!

There is a lot to take in, but most of all remember that you don't have to do it all at once. This is most definitely a marathon, not a sprint.

We did go down the route of early and intensive (as in 1:1, rather than any huge expectations!) intervention, and for my dd1, it certainly helped.

I have 3 dc, all with ASD, and early intervention has helped with them all (of course, by the time ds (now 3) came along, there was no option but early intervention, since we were already moderating so much for dd1 and dd2!). They are all different, and have responded in different ways, but they have all benefitted.

PolterGoose Thu 05-May-16 21:35:39

Laura you could ask every single longish term poster on here whose child has made incredible progress and we'd all give you different answers. Some of us have gone for a more eclectic approach and others have done intensive targeted work, with loads in between. We are all going to say what we've done has been what's driven our child's development. Very few parents admit when they've fucked up (though Shannon Rosa's story in the book 'Neurotribes' is worth a read on this).

But, the more I look back and the more I read from adult autistics, the more I think the best we can do is promote happiness because it's impossible to learn if you're not happy, and the rest will flow from that.

Youarenotkiddingme Fri 06-May-16 06:41:04

My DS is also 11!

Totally agree with others - you'll find your own way and forge your own path to what's best for your DS.

And you'll grow the biggest backbone ever - best advice I can give - email everyone to confirm any conversation had!

zzzzz Fri 06-May-16 07:09:26

Sorry haven't disappeared just can't get a quiet moment smile

Laurajay84 Fri 06-May-16 10:00:27

Thanks everyone for the replies. DS is such a happy little boy but there are two main areas that he struggles massively with - speech and interaction. I suppose I'm just wondering how I can target those and work on them with him.

Speech - Despite being non-verbal, he has recently started being a lot more vocal and babbling so much. At our appointment yesterday however, no further speech and language therapy can be offered at this time by the NHS apart from four sessions of a toddler group run by a SALT.

Interaction - I feel like this is getting worse as time goes on. Admittedly, I have never taken my boys to toddler groups and so forth as it has always been difficult doing such activities with twins and with DT1's additional needs. They are due to start nursery in September but not sure what else I can do to encourage interaction with other people (he is mostly fine with myself and DH but completely ignores anyone else).

originalusernamefail Fri 06-May-16 11:05:36

Laurajay sorry to hijack your thread but do you mind describing your DS to me? He sounds very much like my DS 2.8 . He is none verbal (no words except me-ow), and eye contact/ interaction is very poor except with me. We've seen SALT and community Paed who've been INCREDIBLY vague, they say it might be 'something' or it might be age. I first raised concerns about DSs development at 18 months and I just want to know what I can do to help him be him.

zzzzz Fri 06-May-16 12:55:09

Can he point/choose?
Can he match things?
Do you have any words/animal sounds at all?
Are there any other differences/difficulties?

And as an aside mine is one of twin boys too!gringrin

Laurajay84 Fri 06-May-16 13:31:20

zzzz He can point to things in books but doesn't use a point to choose things etc. He chooses things by reaching for them e.g. If I held up two different fruits he would go to take one rather than point.

Very good at matching.

No words at all but has said words in the past but heard once and never again.

Other differences to his twin are no imaginary play but to me that's not a problem as he just likes different things.

original I will send you a private message.

zzzzz Fri 06-May-16 13:42:08

Ooooo pointing AND matching grin. You can do loads with that.

originalusernamefail Fri 06-May-16 13:43:43

Thanks Laurajay flowers

zzzzz Fri 06-May-16 14:27:48

This is what I think, I am not a professional (but I have actually HAD a child with language disorder and ASD so possibly have more experience albeit lay-persons than the average professional grin ). My opinion is that SALT wasn't terribly helpful for ds. Possibly it pushed his language forward by weeks but how does that help in the grand scheme of things. ASSUMING you are interacting with the boys and giving them at least a bog standard care, I doubt SALT will help that much (NB they DO help in school because they can get things done you otherwise can't). I only say this because of the effort we went to to get SALT and how worried we were about "if it was enough" IYKWIM.

This website

www.absorbentminds.co.uk/brands/absorbent-minds/first-montessori.html

sells some cracking stuff (and most of it you can make yourself).

I am a real fan of Montessori education so if you can find a nursery that does that then I would plump for that (can be a bit ££££). The kit however and the quiet calm approach is ideal for (and was designed originally for) more needy children. There used to be a great on line syllabus by Jenny Chen but it seems to have disappeared, but read anything you can about HOW they teach.

For mine swimming lessons really helped and our local pool were the most inclusive place at that stage smile. I sat on the edge and he poddled in with everyone else and they just helped. Later he had 1:1 lessons, but he was already talking a bit by then.

Riding for the disabled will do riding lessons (nb they wouldn't let my boys ride in the same class which upset me, so check before you go or it will get you in a tizz).

Remember always that you and your boys get one childhood together. Don't waste it on things that don't make you all happy.

Ds isn't "fine" now in the way people think when they ask what the outcome will be. He's lovely and loving and makes jokes and reads and goes to school (with support) and we have travelled with him and had adventures. Our plan is that he stays with us rather than sheltered housing, as an adult but he would never manage independently. For me that's fine because like many people round the world I LIKE extended families and think they are the best way to live. He and his brother get on and play, though his twin is obviously also playing and doing things he can't. We are happy.

iPad is incredibly helpful teaching maths etc and for fun, There are games that the boys play as equals which is very nice for me to see. There are also some stunning apps for our kind of kids grin

Laurajay84 Fri 06-May-16 15:17:26

zzzz Thank you so much for taking the time to type all that out!

Wow, I could spend all day browsing that website. I have secretly dreamt of homeschooling DS, although his brother would LOVE to go to school and I want them to experience life together as much as possible. There is also a very tiny montessori primary school nearby which I have also considered but it is £££££ and seen as bit alternative. Decisions, decisions, why is everything so difficult confused.

I am considering starting swimming lessons for the boys at 3.5 as that is when they start at the group closest to us. He loves the bath but not sure how he would react to swimming - fingers crossed he likes it!

Riding lessons - that's one I hadn't considered. Mainly because DS doesn't show the slightest bit of interest in animals grin. What skills do they get from the lessons (apart from learning to ride, obviously!)?

The ipad - yes, he is very much interested in that grin. Suggestions for apps would be fantastic though!

One thing is that I am finding both boys are starting to get a bit bored at home now. Particularly DS, who is like a different child when he is in an environment with new toys. I would have started them in nursery a year ago but I have put it off due to worrying about how DS would cope without a 1-1. I don't know how long it would take to sort funding out, but if it was quick then that may be an option.

zzzzz Fri 06-May-16 16:03:39

ipad/phone apps

Montessorium apps for learning the alphabet and numeracy and stuff. I particularly recommend intro to numbers and alphabet.

BuddyBear apps are good for language (ignore how monotonous you would find them)

Keezy is free and you can prerecord 8 buttons to say things. I would do Water, biscuits, raisins, outside/garden, Mummy, Daddy but do what suits you guys. The more appealing the thing he will get (to him) the more likely he is to press the button to get it. grin and the app is free grin star

pastizzi Fri 06-May-16 22:49:19

You may want to at least look into ABA.

My son was diagnosed at 24 months and I can say with 100pc certainty that the 'help' offered by the LA and/ or Early Bird was utterly useless for us. He was non verbal, with zero receptive language, and he really needed intensive help in order to speak/ understand. As well as play, interact, eat normally, toilet train, self-calm instead of bang his head on the floor...I could go on!

He would never ever have picked these skills up incidentally, and had no motivation to do so.

He talks now, and is a million times happier now that he can communicate and interact with the world around him. His life would have been hideously restricted if he had not learned what he has through ABA, and his frustration and anxiety would have been sky high. Our absolute priority is that he is happy, and we never sought any kind of 'cure'. We just wanted to equip him with as many skills as possible, so that he could participate in the world around him, and communicate his needs long after we are gone.

But everyone has to decide what they feel is best for their particular child

JsOtherHalf Sat 07-May-16 12:43:48

This site is helpful for some:
www.peatni.org
They link into an online version of aba for parents:
www.peatni.org/what-is-simple-steps#what-is-simple-steps

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