DS1 (2.8) is 'presenting with ASD' any advice welcome.

[MrsKoala]

My DS1 has always been an unusual child and we struggled with him from 15mo and started seeing a Paed. The Paed now says he is old enough to diagnose and she thinks he is strongly presenting as having ASD. We are on the waiting list for a formal assessment but the Paed thinks this is just a formality and we should start researching and acting now.

I have a meeting with his pre-school about this this afternoon and i am a bit tearful and unsure of things i need to say. If anyone can suggest what might be important i'd really appreciate it.

DS1 is a good talker at home but is very very quiet at pre-school. He is full of energy and loves running around.

We particularly struggle with getting him to go to bed. Any attempts to put a routine in place are met with meltdowns. He now hates the sight of books because he associates them with going to bed. Any tips also gratefully received.

Thanks

Hi Polter. :)

We can't do bath as it is a real excitement for DS. He can't do a calm relaxing bath at all. TV sends him into a meltdown when we turn it off. When i get a book out he screams blue murder 'NO BED NO BED' and runs to the door to get out of the room. When we take him into the bedroom he pulls all the covers off the bed and jumps on them from the bed. Everything which we try to be calming turns into a high energy exercise. Just getting his jamas on takes ages and results in screaming and kicking most nights.

Sitting in front of his favourite progs/youtube trucks make him sit still and he plays with my hair. But getting it turned off and him into the bedroom is a nightmare. We have to say no screen after 6 and let him cry for 2 hrs before he goes to bed at 8 most nights.

Other than that he likes to build track with daddy, but again when we say time to put it away gets very upset.

He does go to pre-school but they don't seem to have any techniques that work for him either - apart from distraction.

He doesn't have a nap and that's the problem. He probably spends about 70% of his time exhausted. He has never napped well even when he did and it would take me 3 hrs to get him to sleep, then he wouldn't want to wake up. And he wouldn't go to bed at night. Since he dropped his nap - or more accurately DS2 was born so i just couldn't spend hrs laying on the bed with him every day - his bed times have been slightly easier.

Some days he will go to bed. We had a month or 2 of a really lovely routine -books and straight to sleep, but then had to travel to PILs more regularly and since then he's gone back to being a bugger.

The most crushing part i find is his hatred of books. I feel like by associating them with bedtime i have ruined reading for him. :(

My DS responded surprisingly well to a simple countdown where just stopping the activity prompted a massive meltdown.

We just count down from ten, although I know others have better luck with something visual (like an egg timer).

He loved the books we have, the gruffalo and a squash and a squeeze are his favourites. He snatches the books from my hands and tries to close it before i've even started. The moment he sees a book he gets upset. When we say, lets go and have books in 10 mins he gets upset. It's not the specific books. It's the association with going to bed.

He likes trains, trucks and bin lorries, but isn't interested in them as a subject of a book. He just likes watching them on youtube.

The egg timer is a good idea. I will look for one. It seems the more preparation we give him the longer he has to get distressed. The moment a subject is mentioned that he doesn't like he gets cross.

Have you ever seen an OT? Finding it difficult to calm can be related to sensory issues!

Dd3 settles better with a weighted blanket but in term time it can still take 2 hrs. In the holidays she settles much quicker.

What is an OT?

He actually sleeps really well when in bed - has slept thru mostly since 4mo. It's just getting him under the blanket in the first place!

If you contact the children's sleep charity they might be able to give you some help

Hello there. We've had great success with a visual timetable in helping get DS (5) to do things he doesn't want to do. In our case going to school. Our asd outreach worker suggested it when we were having awful school refusal.

I found it helped to break the morning routine down into small, simple steps as I think DS was getting overwhelmed with the amount of requests and commands: 'get up/get dressed/ eat breakfast' etc. So we made a laminated chart and velcroed pictures of each stage of the morning eg picture of bed, a picture of breakfast, a picture of tv, shoes etc. DS would then remove each velcro square once he'd finished that part. He seemed to enjoy removing the squares and I think it helped him feel more 'in control' of what was happening to him. And also he learnt what to expect next.

It really helped in reducing the battle between us. As it was 'the chart' telling him to do it and not me, iyswim.

Now we don't even need to use it. Not sure this will help you though as I know every child is different.

I see in your post that you've been visiting family quite a bit. The great thing about a visual timetable is that you can take it with you and certainly for my DS it really helps to maintain that routine. Good luck!

Hello Koala you are in great hands here with Polter and the rest. Hope the meeting went OK.

For the future, I can say that my ASD/C relatives are happy.

Relative One in her 50s was diagnosed in her 40s saying "it would be nice to think that what separates me from my fellow humans was not, after all these years, my fault". She is now totally used to the fact that she had an ASC (Condition) and is justifiably proud of her volunteer work at an autism charity, her gold blood donor status and her sky dive.

One younger relative had lots of training in how to 'do' mainstream body langauge and can avoid the faux pas of Relative One, is married, working earning and paying taxes.

Another is about to leave college and has gone from being totally overwhelmed by three people in a car chatting, to being able to control his sensory system and sit in a loud family party, join in and enjoy it.

There is a lot to play for, and happiness is achievable.

Thanks all. I haven't had a chance to read the links but i will try later. i also ordered some books which i need to look at.

DS was back to pre-school this week and has been pushing the other children when they are sitting quietly on the mat for reading time. They say when he's outside and running around he doesn't bother them but when it's quiet time inside he can't leave them alone.

He's also so tired. I just fed the baby then came into the front room to find him asleep on the floor. I can't wake him. This means a 2am bedtime tonight and probably missing our swimming together time in the morning. fucking great.

Just read up on the OT and i think we would really benefit from having that kind of help. Thank you for suggesting it folks. I am failing so badly at this i really need someone to come to our house and just tell me what to do. I can't get DS to do anything.

I also wanted to ask a more emotional question to all those who have dc with ASD. How did/do you cope with the soul crushing sadness and grief you feel for your dc's loss of a NT childhood and NT behaviours?

I take DS to the park and swimming and all i feel is overwhelming loss and grief at the way he cannot/does not enjoy these things in a NT way. At the park he doesn't go on anything but spends the whole time up and down the steps of the public lavvy or trying to kick and stamp on pigeons and squirrels. At the baths all the other kids are playing with the floats and going down the slides or jumping in and he just wants to stand on the steps to the pool where the OAPs are doing their waterobics. People look at him like he's odd and i just feel so sad for him. And me. I know i'm being self indulgent, but i expected to be able to do drawing and baking and go to the swings etc with my dc, but we can't, and i feel like this is totally not what i wanted from motherhood or what i am equipt to deal with. I know not all NT children like ALL of those things, but i am struggling to find ANY common ground with DS. We used to be so close and i could intuitively understand his every need and now i just feel him slipping away from me. I am finding the weight of this just too much to bear. I ache for my baby.

Do you have other NT children Polter? If so how do you balance their needs?

I have a baby of 8mo and i want to be able to take him to music and toddler groups and to the park, but i can't with DS1. I don't want this to blight DS2 life.

My Nieces are twins and one has ASD and the other is NT. My heart aches for the NT one as everything is dictated by the ASD ones behaviour. I feel she will be very resentful when she is older.

for you MrsKoala.

There's a virtual playgroup over on the special needs chat page if you fancy joining us? We're all in the same boat and at the same sort of stage.

I have a 4yo with asd and a typically developing 2yo. It is hard balancing their needs, although at the moment a lot of their interests and abilities dovetail because DS1 has significant impairment whilst Ds2 is quite ahead , particularly his language .
It's exhausting trying to meet both their needs.

Hi MrsKoala

I strongly suspect DS3 (nearly 4) has ASD/SPD-I have an appt for him to see a paed on Saturday morning, for an assessment.

You so poignantly describe in your post of 13.06 how I've been feeling about DS

In terms of balancing the other DCs needs, I just do the best I can. DH and I sometimes at the weekends take either DS2 or DS3 one to one so they both get a chance to do something special they want/choose to do and get full attention from one of us. DS2 and DS3 used to dislike being apart but that's recently changed so that's working out well.

DS1 is much older (14) and is stoic and pragmatic about things mostly. I know it's hard for him though, as we are limited as to what we can do as a family, but we muddle along, do stuff in the evening sometimes when the little ones are in bed, he can do stuff with his mates independently now, has a weekend job etc and would probably spend lots of time in his room/with his mates rather than us at his age anyway I think. He's very accepting of things as they are and mostly unresentful as far as I can tell. DS1 said tonight that although things are often manic and stressful here, it's also surprising, different and sometimes fun living with DS3

DS2 (5) is a very gentle and joyful soul, and seems to have an incredible natural ability to defuse, distract, calm and manage DS3's behaviour most of the time. He has a neuromuscular condition that affects his hands and feet, but is affected mildly compared to many others with it, and DS3's energetic daredevil antics can be a good thing as they encourage DS2 to push himself physically in a way he might not if DS3 was less active reckless. In lots of ways they create a funny sort of balance as they're so different, and they expose the other to different ways of looking at things/doing things.

I home ed DS2 and DS3, so we are able to spend lots of time outdoors which seems to really benefit and calm DS3 a lot ( and DS2 loves nature/outdoors) and have very few restrictions re being somewhere by/at a specific time so can be very flexible, which suits us well. Today has been tough as I've had to do a 5hr round trip with DS2 for treatment he needs in London, so I'm shattered, DS3 is out of sorts because of the change in routine, and I've been quietly and self indulgently weeping because I just don't know what I should be doing for the best for the boys, because I am exhausted by the daily stress, because I feel so ill equipped and in the dark about what DS needs, especially without a dx as yet. I have no real practical family support, but if I did, I think I'd be enlisting GPs to do some fun things with DS 1 and DS2 sometimes (DS3 only wants to be with me or DH) while I did something with DS3.

It was so so hard when we got the diagnosis I was broken
I posted a post like yours at the time and someone said it gets easier and in reality it is not so bad. I couldn't see what they meant but held on to that thought

Two years on I can see what they mean. DS has changed - he can now do some of those things he couldn't at the park, drawing & baking is something we can do

I still struggle with the looks etc but as time goes on my skin gets thicker!

Thank you all for sharing your family stories, it really helps and I don't feel quite so alone now.

I have called a cranial osteopath about taking both the boys (ds2 is a bugger to sleep).

Do any of you use a weighted blanket at all?