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The 4 day countdown.....

(15 Posts)
Laurajay84 Sun 01-May-16 16:36:50

Well, the time is almost here, now only 4 days stands between DS, and a ASD diagnosis. I honestly don't know whether I am dreading it or will be relieved when it is finally over.

We now know that DS, who is almost 3, definitely has ASD. I suppose the extent of his issues is what concerns us most now. In short, DS is happy, affectionate, eats well, sleeps well, plays with toys appropriately, knows letters, shapes, numbers, colours, and has done for over a year now. His issues are that he is non-verbal (although will say a word very occasionally but never again), social interaction with anyone other than myself and husband is extremely limited, and he has a couple of sensory issues. I don't know how severe that makes his ASD?

Anyway, I want to know from other lovely mumsnetters what more we can be doing to help our son? I am a firm believer in the 'whole-person' approach and want to do everything I can to help him reach his potential.

Speech

Like I said, he is non-verbal, although every few months may say a word but the word is never heard again. I had wondered whether this may be Apraxia? On a positive note, he is babbling away all the time now and I hope this continues to improve.

Play

A year ago he had lost all of his play skills and used to run up and down the room and only read books. Now, he will spend most of the day playing and keeping himself busy - although imaginative play is still lacking.

Nursery

He is due to start nursery in September with his twin brother. I would have liked to have sent him earlier, however I'm not sure how much this would benefit him? An ABA provider told us that he is 'not nursery ready' so I'm now concerned about him going.

Social

Currently he does want to spend most of his time with DH and myself, no one else really interests him, particularly children. Although, I'm not sure how to encourage this?

Sensory

He does have a couple of sensory issues - hand flapping, occasional jumping and verbal stimming when he is excited. I presume that we will be offered an appointment with an OT after diagnosis?

Starting school in 18 months time

I have no idea on this one - if he's not nursery ready then how on earth will he be school ready?

Other Activities

I've read a lot of people's comments about taking their DC to swimming lessons? Does anyone have any other suggestions for suitable activities?

DLA

Not really on my radar yet, but as DS is pretty easy-going and well-behaved, I'm not sure whether we will even qualify for this as he doesn't need any extra care as such.

Anything else? Phew.....apologies for the long post.

If anyone has any words of wisdom, suggestions or advice on any of the above I would be ever so grateful. I just want to start making a plan of action.

PolterGoose Sun 01-May-16 16:57:57

He sounds like a happy little boy, he interacts well with his parents and keeps busy, is healthy and sleeps and eats well. That's good going for any toddler smile

There's nowt wrong with stimming, and if he's not interested in other people yet it's probably because they're just not interesting enough for him.

I would re-frame 'not ready for nursery' as 'nursery isn't yet set up to be ready for him'. What can nursery do to make it a good experience for him?

whatamess0815 Sun 01-May-16 17:59:26

dla - this is based on need not DX. a non-verbal 3 year old will surely need support over and above a typical peers (you probably do a lot of stuff automatically by now without realing the extra afford).get yourself the cerebra guide for DLA (Google) and apply. if he gets DLA middle or high rate care you are then also entitled to Carer's allowance if you earn less than £110/week. I don't know your financial circumstances but for most families I know withnDC with complex needs, DLA is a lifeline.

nursery: if I had my time again, I would not have sent DD to nursery. it really was no benefit to her (at 3 she was non verbal, she has ASD and severe learning diffs). I couldn't afford becoming a SAHM so had no option to farm her out to nursery.

sensory - OT did nothing for us. ABA was a great help though with stimming.

school - he will probably need an EHCP. I would probably apply now. if you have to appeal (for refusal to assess or the contents, the 18 months isn't a lot if time). IPSEA have model letters on their website

PolterGoose Sun 01-May-16 18:09:27

Sending a child to nursery is not 'farming out'

And I honestly can't understand why you'd stop harmless stimming. That's just cruel.

hazeyjane Sun 01-May-16 18:14:59

Ask the senco at nursery about funding for a 1-1 for his 15 hours which he should be eligible for.

Ds's 1-1 at preschool was amazing, he gained a huge amount from going and they gained a huge amount having him there, they also helped with the transition to school and EHCP.

whatamess0815 Sun 01-May-16 18:16:19

nursery did really nothing for DD. she would have been much better off with us at home where somebody deals and engages meaningful with her.
polter you don't know anything about the kind and extend of Dd's stimms. I really don't think you are in position to call us cruel for addressing it. have a biscuit

PolterGoose Sun 01-May-16 18:21:30

what The OP was asking for advice to deal with her child's stimming (which she describes in the OP) and I assumed you were responding to that. If your child's stimming was harmful then perhaps it would be helpful to say that, otherwise your response looks disproportionate.

Sledgehammer to crack a nut and all that. Or a biscuit.

whatamess0815 Sun 01-May-16 18:32:32

look polter, we all do what we think is best for our children. and in any case, I would not describe ABA as a sledgehammer.confused

Laurajay84 Sun 01-May-16 20:30:06

First of all, thank you all for your kind replies.

Polter You're right, he is a happy little boy and a joy to have around. We are very lucky in this respect. The stimming certainly isn't a problem for us, and by all accounts is probably relatively mild, it has certainly decreased over the past year anyway. The only issue is when he get over-excited/overwhelmed by something or the environment, it can cause him to go in a bit of a daze and take away his concentration and focus on the task at hand. I was just wondering if we could get any help with this from OT or similar.

What Thank you, I will look into DLA further. The money would certainly come in useful with all the extra spending on DS in the foreseeable future.

hazeyjane Thank you for this. I wasn't aware that I could request 1-1 funding for him. Is it the nursery that will arrange this? Do you happen to know how long it will take to get in place? With only 4 months to go until DS starts nursery, time is certainly ticking.

Lesley25 Sun 01-May-16 20:50:34

Just one thing to bear in mind, it's really difficult for any pead to e able to ascertain the severity of the asd, so whilst I understand you're about to get the asd dx - be prepared for them to hesitate when it comes to severity of the asd. You described your son as how my ds was at just before 3 years and I remember the pead describing him as certainly not mild purely because he was being dx before 3. This was such a shock to me at the time and blindsided me for a while when it shouldn't have. Noone can predict the future. In retrospect i wished my ds had gone to the ss nursery where at this stage they could've worked on communication from an early age. Hard as it be, look at those. They are so few and far between and heavily oversubscribed that a dx at this stage would push you to the front of the queue. I wish someone had told me that.

Lesley25 Sun 01-May-16 20:58:40

I forgot to add,
Instead we went with a fantastic nursery but they did just baby sit him. They helped learn self feeding and supported our thinking and salt requirements But it was a wasted opportunity. I then perservered with ms twice in different schools with a full echp of 32.5 hours for 2 years before moving to ss. Had my ds gone to a ss nursery I would've seen that he wasn't going to be happy at ms and learn. That one step for me could've saved my ds so much upheaval and upset. Just give the ss nurseries a chance and see what they do and how they help non verbal children. Had I done one visit I would've known but it wasn't even on my rader because I just wasn't aware they even existed.
Good luck with your journey x

hazeyjane Sun 01-May-16 21:12:54

In our area it is called inclusion funding - I am not sure how long it takes because ds transferred from a special needs preschool. You need to google sen early years in your area and see if you can speak to a keyworker who can advise you on what SN provision is available and what funding is available. Then talk to the nursery about how best to support your ds.

In our case SN preschool did not suit ds, but the ms preschool he attended was very flexible in their approach to ds, they all learnt Makaton (he is non verbal) and were very gentle with his extreme separtion anxiety - allowing me to stay for months.

After he left I voluntereed as a thankyou, and have now been trained and am a 1-1 to 2 different children in the preschool.

So much depends on the particular setting, and how it suits your child. Don't be afraid of giving a setting a go, visiting with your child and changing if necessary.

Frusso Sun 01-May-16 21:24:31

My dd went to a SN nursery and a MS nursery. (She was also non verbal at the time) she was eaten alive at the ms one, she was not ready and even with the best will (and 1:1) in the world she couldn't access learning there. She was however calm at the SN one, they had a hydrotherapy pool, speech and language therapy, OTs, PTs, and had a sensory room, and all staff understood ASD and other SNs.
In the nursery days I was adamant she was going to be mainstreamed, it would be hard work but she could do it.. With hindsight, the more we pushed her towards it the further away from her it got.
Equally, without seeing her in that ms environment, we didn't know.

Laurajay84 Sun 01-May-16 21:45:06

Lesley Thank you for your reply. I am prepared for the worst when it comes to diagnosis and severity. However, apart from the things mentioned above, my son has no other behaviours, no problem with routines and flexibility, and is generally very easy going and relaxed. When I read others long lists of behaviours/issues their DC have, I do sometimes struggle to see how DS could be described as much more than mild/moderate.

Laurajay84 Sun 01-May-16 21:50:09

As for nursery, it certainly is a difficult one. I have no problems with a SN nursery, however, as DS has a twin brother, it would be heartbreaking to have to separate them.

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