Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

DS seems to be getting worse

9 replies

Lunafreya · 05/06/2018 18:29

Hi all, I'm a bit of a lurker on here, but I am hoping to get a little advice. I have a DS aged 2 (though is turning 3 at the end of this month). For some time he has been showing signs of potential ASD. I already have a DS aged 6 who was diagnosed with it last year, so I have some idea of what to look out for, though both my children are very different! Currently, DS is non verbal, he can say 'mama' and 'dada' (very occasionally 'daddy'), but it's often indiscriminate, he's not looking at us when he says them. Outside of this is just babble. He used to say more words, but appears to have regressed. He doesn't point or wave, and tends to only communicate by hand leading, eg. giving me his cup when he would like a drink, or taking me to the fridge for some food. He doesn't bring his toys to me, and tends to play repetitively with them. There is no imaginative play. He is currently attending nursery three days a week, and very much does his own thing there, he doesn't play with the other children.
We're currently on the waiting list for a proper diagnosis, the doctor at the initial assessment seems to think it could be ASD rather than a developmental delay, as DS had poor eye contact, no speech and very restless behaviour whilst we were there, pacing up and down the room and trying to play with everything he shouldn't, as well as consideration of his history and family history (DD diagnosis). We're also awaiting results of genetic test (DD had no abnormalities).
DS is becoming increasingly more hands on, he is not sleeping very well, it can sometimes take a lot of attempts to get him to stay in bed, and then sometimes he is getting out of bed in the middle of the night. The problem with this is that he can be very loud. He has a fascination with opening and closing doors, and he really slams them shut. He also repeatedly kicks the floor.
Getting him ready for nursery on a morning is a battle, he hates putting his trousers on, and this has now extended to his shoes and coat too. I have a pushchair for him as he started sitting down and not getting up when he was fed up of walking, even at short distances, sometimes he doesn't want to go in there and will have a tantrum. I can't reason with him as his understanding is poor, this is obviously frustrating and upsetting for us both.
My main worry at the moment is that he is eating really poorly. He only eats crackers, raisins and bready foods, and drinks milk or juice. He used to eat lots of things but has suddenly gone off them. Nursery are telling me that he's not eating a lot of what they offer either. He does seem to have reflux but doesn't act like he's in pain, so it's hard to distinguish whether this is the reason for him not eating? He does keep trying to eat inappropriate items, I caught him eating suncream the other day, and he keeps licking the wall where we have just had to use some filler.
Some additional info, SALT have been involved with him since end of last year, they see him at nursery, though I don't feel he has made much progress. Early Years Intervention are also involved, and nursery are thinking of applying for funding to give him a one to one member of staff.
It should also be said that despite his difficulties, he's a very sweet little boy, he loves giving me cuddles and will let me kiss him if I ask. He's also physically very good at certain things, he can complete a simple wooden puzzle, he throws a ball really well, loves running about, and especially climbing. He seems to get enjoyment from certain books, he will sit and look at them, and laugh at the pictures, even if he has looked at the book before. I did used to read to him but he won't let me now, he's very eager to turn the pages himself.
I'm sure I've missed a few things out, but I'm feeling really overwhelmed by him right now. A lot of our time together at home consists of keeping him out of danger and struggling with routine.
Is there anything I can do to improve his diet? Our GP prescribed Gaviscon for the reflux. Also, am I right to think the refusal to get dressed is a sensory issue?

OP posts:
livpotter · 05/06/2018 18:54

Wow he sounds so much like me ds at that age. Mine's now 4.5, I found 3-4 really difficult behaviourally, diet wise etc. My ds has a regression just after his 2nd birthday and I think he was just so completely overwhelmed by it that pretty much everything went out the window.

I would love to tell you that my ds eats a huge range of foods now but his diet is still mainly milk. He does now eat some fruit and veg and he is getting better about trying new foods than he was before. I did find playing with food (not at mealtimes) in a sensory way would encourage him to try things, for example showing him that French beans make a snapping noise when you break them. Also giving him what you know he likes then just adding one new thing to the plate each time, in case he's feeling adventurous.

The clothes and the wall licking, sun cream eating sound sensory to me. Do you think you might be able to access an occupational therapist? It's made a huge difference to my ds. If you have an older child with ASD then you probably have lots of books already but 'the out of sync child' is a good one for sensory differences. My ds only wears one outfit now, we have 7 of the same top and trousers. It makes getting dressed easier for him (and us!).

spader1987 · 05/06/2018 19:08

Hi op, my ds 8 has asd and is totally non verbal. We have been through (are going through) many of the issues you have mentioned.
Do you use visual timetables with your ds? What aids do you use for communication? Many of the issues you have mentioned we have improved massively by breaking them down visually in a way he understands. For example introducing a morning timetable so he knows what is going to happen, when he will put his uniform on etc. We have a picture of a cartoon boy, each part of his clothing velcros on. Ds uses this visually as such he will put his trousers on when i have put the trousers on the image. Hopefully that makes sense!

My ds does a similar thing with food. He will sometimes eat most foods, then fixate on a particularly small group of foods for a period and we seem to go around in this circle. I personally have acid reflux and it can be quite unpleasant! This may be making the issue worse for your ds but it is unlikely to be the only issue. Have you tried giving ds options, this would depend on what communication methods you are using. My ds eats better if he is given options and chooses via pecs what he would like to eat. I am in charge of the options but he is given a little control which seems to work for him.

Reading your post in many ways i thought you where describing my ds!
Hopefully this has been of some use!

Lunafreya · 20/06/2018 22:03

I'm so sorry for the delayed reply, I tend to post things and forget after Blush

Thank you for the recommendations, the eating problems appear to be getting worse. He is not eating an awful lot at the moment, and then he's stuck on dry/sweet foods. Every single day he's at nursery, he's refusing the main meal for lunch and only eating dessert, even then he doesn't always eat it all. Some days he's eating nothing there. I'm at a loss. I haven't heard as much regurgitation from him since he started having the Gaviscon.

In terms of communication aids, a relative suggested I try using real life photographs of him carrying out certain actions e.g. eating, going to bed etc., so I printed and laminated some photos to use as cards. I spent some time trying to explain them, and trying to encourage him to give me a card to tell me what he wants, but I struggled, he didn't understand and threw the cards around.
I'm not sure about accessing occupational therapy, though I have heard it can be difficult for some people? I never tried accessing it for my DD. How would you ask for this?

OP posts:
livpotter · 21/06/2018 08:57

I think often nursery environments are so overwhelming for our kids that they will find it harder to eat/try different things at nursery. Personally I'm happy if he manages to eat anything at nursery even if it is just the pudding. Then you can try and give them something more nutritious at home (easier said than done!).

The visuals you really have to stick with as they can take a long time to learn. The best way to start is with a simple now next card. If you laminate paper with now next on it then use Velcro so you can change the pictures once an activity is finished. You can get your ds to help remove and put up the pictures so he feels more involved. And maybe have a box/bag they can post the finished pictures in so that they don't get thrown around everywhere. It definitely took a few months to respond to the images.

Is your ds under a paediatrician? I know in some areas you can self refer for OT. But otherwise I think the paediatrician or nursery can refer. We do it privately which is expensive but we have pretty much no provision in our area.

livpotter · 21/06/2018 08:57

Luna that's a great idea about the school uniform picture! I'm definitely going to try that with ds.

Lunafreya · 26/06/2018 21:43

My son is currently under a paediatrician, I think as part of his assessment process? I am in contact with them at the moment as we're awaiting the results of genetic testing, once I get the call back, I will ask about OT.

DS has had another day where he has refused even the dessert, this is happening more frequently lately. There are ongoing concerns at nursery that he's not happy if there is too much going on, so I don't know if this could be a reason for avoiding meals. As he is now preschool age, the plan is to keep him under the umbrella of his current setting, but to move him to a building with less children attending, this September. The manager feels he will not cope in the main preschool. I am happy for him to move if it helps him. Going long periods during the day without eating much does worry me.

OP posts:
Lunafreya · 28/06/2018 16:00

Update, paediatrician called me back. I mentioned my concerns, asked about possible referral to OT, for him to say "Didn't I already do it?". Not sure whether he intended to when we had the assessment, but, he is referring now, so it was as simple as that. Hopefully, it will be helpful Smile

OP posts:
Lunafreya · 28/06/2018 16:00

Update, paediatrician called me back. I mentioned my concerns, asked about possible referral to OT, for him to say "Didn't I already do it?". Not sure whether he intended to when we had the assessment, but, he is referring now, so it was as simple as that. Hopefully, it will be helpful Smile

OP posts:
livpotter · 28/06/2018 17:41

That's great Luna. Hope you get an appointment through quickly!

New posts on this thread. Refresh page