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Will I ever have a conversation with my DS with ASD?

(20 Posts)
MommyToMyLittleStar Tue 18-Nov-14 23:40:07

I am generally a very chatty bubbly person or atleast I was. DS1 is 3 & has been diagnosed ASD 1 month ago. Wasn't expecting the diagnosis as thought the speech delay was due to glue ear & repeated ear infections... He up untill age of 2 was very social & used to babble back & forth... He does have a few word which he rarely says & he just names a few things or counts.... He kind of regressed/plateaued then on. Seeing his early development which was spot on & seeing how social he was I used to think he was going to be one chatty boy....
I dropped him to his nursery this morning- they have just moved him to over 3's room- 1 boy says 'why is he here? I don't want him on my table'; the staff told me that some children were asking 'why does he not talk? Why is he in nappies?'.....
I know these are just inquisitiveness from preschoolers which is very normal... But I came back in tears... I worry about him being isolated- not that he picks on any of it for the time being- he was actually more interested in exploring the room.
When I see his peers chatting up a storm, I think of all the things I wanted to tell him, teach him.... All the questions I was expecting him to ask.... Will he ask them ? All the conversations I thought I will have with him... You know when they are 2-3 chatting away & sharing their innocent view of the world.... And now I am worrying wether I will ever a conversation .... Please cheer me up with some positive stories.... When did your speech delayed DC with ASD start to speak?
I want to be positive & despite of everything I see a lot of potential in my DS & want to remain positive.....

whatadrain Wed 19-Nov-14 09:00:00

My son was diagnosed with autism just before his third birthday. I could have written your post myself a few years ago - it's heartbreaking. DS is now 9. My advice to you is to be proactive and demand every bit of help you can from your health visitor. You MUST get him statemented (EHC) for school. I did this while DS was still in preschool so that I could get him into the local special needs school, which has changed his life. He's so happy there and has friends just like him who don't judge him! Unfortunately it took a year of mainstream education until he got a place BUT he did have a 1:1 TA during that time that made all the difference. Talk to his pre-school about it and see if they can refer you.

Also, get in touch with local special needs charities that run events and clubs for SN children so you can meet other parents and children with similar needs. They might also advise you on claiming disability benefits (non-means tested.)

DS is a happy little boy. He didn't speak until he was 4.5, wore nappies until he was 6 and had dummies until he was 7. At 9 he is more like a 5 year old but he can hold a conversation and is loving towards me an his siblings. It's a long road but a very rewarding one! Good luck, OP!

Glittery7 Wed 19-Nov-14 09:33:55

My DD was very similar to how you describe your son aged 3. She had very little speech and what she did have she used only to request things.
She is now 6, was diagnosed with ASD last year and is holding her own in mainstream.
We do have little conversations now. She is very chatty (speech still delayed and unclear) but she talks to me all the time, points things out to me, shares her interests and has come on in leaps and bounds.
She started using PECS at preschool and still uses them when needed but there's no need for them with her family at home.

I felt all the emotions and sadness you are experiencing. 3 years later we have a different child.
There is hope. My DD doesn't have a statement but has 15 hours of 1:1 support per week.
There is light at the end of the tunnel.

Firstnamelastname Wed 19-Nov-14 09:47:20

I could have written your post two years ago & am also someone who things are different for in that talking has improved with time

Firstnamelastname Wed 19-Nov-14 09:49:20

When does he start school? Where would he be likely to get a place and what is the Senco like at that school - that would be a good things to find out.

MommyToMyLittleStar Wed 19-Nov-14 09:53:11

Thank you both... So glad your DC's are doing well.... He's just started with pecs & fingers crossed so far he's doing okay- at Stage 3 in less than 3 weeks.
He's been aPproved for EYFI funding & next term he should get upto 15 hrs 1:1 (he goes to a private nursery & has been well adjusted there). He's got 2 yrs for school- so we want to wait & see his he progresses (luckily September end born!) Hope he too starts speaking soon & we are already working on potty training...

MommyToMyLittleStar Wed 19-Nov-14 09:56:19

Thank you firstnamelastname
We plan to look at schools early next year- we want to try mainstream first and see how he fares....

Firstnamelastname Wed 19-Nov-14 10:17:34

That's good
The key for us has been finding a nice mainstream school with nice Senco and ethos
Look after yourself and put stuff in place for you to make sure you don't get exhausted with it all

Firstnamelastname Wed 19-Nov-14 10:20:09

If it turns out that the school you want is a bit out of catchment that is where having a statement used to help
(Not sure if new EHCP does or not)
So just bear that in mind as that takes time

zzzzz Wed 19-Nov-14 10:43:36

Sounds a bit like mine.

Don't assume because he's not talking that he doesn't want to ask those questions. You get very good at monologuing grin

And at 9.....lots of chat and conversation (though still different). For us much the same development but drawn out. I like it grin

MommyToMyLittleStar Wed 19-Nov-14 12:13:24

Feeling a lot better after hearing all your stories- other than PECS & interacting with them constantly, is there anything else you used to help with speech? I have been looking into ABA- but there is a waiting list in my area...

sammythemummy Wed 19-Nov-14 14:05:52

My dd was very much like your ds at 3, lots and lots of single words/requesting but not functional conversations.

She's 4.5 now and can have conversations and more importantly she's showing her personality. Some of our conversations are like this:
Dd: what day is it today?
Me: Monday
Dd: oh, is soft play on today?
Me: no that's Friday
Dd: ok, can we go to the big park today? Please please please! I really want it. squints eyes and looks innocently at me

Her speech is still immature, she doesn't use past tense correctly, she mixes up pronouns sometimes, missing many adjectives/nouns but
If someone were to tell me she'd be able to hold back to forth conversation, I wouldn't have believed you!

ABA, especially Verbal behaviour therapy has helped us a lot! It's worth looking into it.

Good luck

MommyToMyLittleStar Wed 19-Nov-14 15:07:23

That's so sweet Sammy- my DS doesn't have that many single words & doesn't use words much for request yet.

JJXM Wed 19-Nov-14 15:36:49

My DS was like this when he started nursery last September - no words and still in nappies. I found that most of the children just accepted him as he was and the nursery handled it well by telling them that James was just like them but he didn't talk very much (I remember one mum at a birthday party getting very embarrassed when my DS arrived and her son said 'that's Jj he doesn't talk). Even when DS left nursery in August he still only had three words.

He's now been at a special school just for autism and he's come on so much. We accepted that he might never speak but in the last month he has gone from 3 words to over 30 and is putting two word phrases together. We found pecs was very helpful I. Getting DS to communicate.

MommyToMyLittleStar Wed 19-Nov-14 15:49:17

Thanks JJXM- I know never speaking is a possibility- but somehow my instinct says he will speak & I have to find a way to facilitate that.... I hope for the best..
Glad to hear your DS is doing well- his Nursey too are going to get books they said to explain we all are different, but still the same....

Firstnamelastname Wed 19-Nov-14 17:55:27

His nursery sound really good

StarlightMcKenzie Wed 19-Nov-14 20:05:54

What do you mean by there being a waiting list in your area for ABA?

ABA is something you just get on and do, you don't wait for it. confused

6 months of ABA and my son's receptive understanding went from 2nd percentile to the 54th and after 9months to the 92nd.

He also started chatting after just a few weeks of ABA.

That isn't to say that it does that for all children, but I think it is safe to say that because of the nature of it (careful assessment of difficulties, plus a very detailed targeted programme of next steps presented in the most effective order of learning) that if you're child has the capability it will help bring it out fast.

MommyToMyLittleStar Wed 19-Nov-14 22:35:26

It's not as easy to find independent ABA consultants/supervisors up North. So the option is to read about VB/ABA & try to DIY it for the time being- but would like to be guided properly- the waiting list is for organisations who run the programmes.

sammythemummy Thu 20-Nov-14 07:47:14

Sorry I hope it didn't come across as she was speaking in sentences at 3! Her requesting at that age was pointing and saying "juice". That's it.

Are you able to find an experienced tutor? You could do a few sessions with her and pick up how to do it. Although ABA is very easy to do, I needed to see it in action to understand how to do it IYSWIS.

MommyToMyLittleStar Thu 20-Nov-14 11:08:59

I found someone who says she's a supervisor but will become consultant if she passed BCBA exam-
She's available only from early next year though.
Better than autism partnership who have 1 yr waiting list atleast....

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