Saying Hello! DS1 just dx with ASD, am feeling a bit fed up

[becs1973]

Hi all
Not been on this section of mumsnet before, in fact not really a big mumsnet user so far, but have a feeling I'm going to be in here quite a bit from now on so wanted to introduce myself.
DS1 is 2.11 and has just been dx with ASD. We've had concerns about him since he turned about 2 years old. We left the UK to live in Malaysia when he was 16 months old, at that point I'd say he was developing on a par with his peers. It took a while to get settled in a new country etc and for a long time (mainly because I was pregnant with ds2 - 8 months old now - and having an horrendous time with vomiting, dehydration, drips etc etc I don't do pregnancy well) I pushed the issues with ds1 to the back of my mind. Finally in January of this year I took him to see a SALT. Everything is done privately here if you're a foreigner so I can just book him in and take him to stuff, just have to pay for it! She diagnosed a speech delay in both receptive and expressive language, this was already obvious to us anyway, as he had a vocab of around 10 single words, has never said mummy or daddy, cannot say yes, only has a few animal words and some body parts which he has since lost. She also referred him to a developmental paed as he had minimal eye contact, mouthed the toys, slammed his body against a sofa, had no verbal imitation skills. All red flags that I realise now I was just avoiding dealing with.

So we went to the paed who did the MCHAT with us (didn't realise he was already outside the age range for this I think?!) which came out with borderline ASD. She felt he definitely had some sensory processing issues - which funnily enough I'd already thought about for myself. When he was a baby he could not sleep - of course being our first we thought we were doign something wrong, but more and more I'm convinced he already had problems then. He would windmill his arms and legs still at 1 year old, we would have to hold him down to get him to relax enough to fall asleep and then he would only sleep in 1.5 to 2 hour stretches at a time. I was exhausted and suffering severe PND and PTSD related to a terrible traumatic failed induction and EMCS when he was born. He still has sleep issues now. Anyway paed was reluctant to put a dx of ASD on him at that point, we are going to see her again on the 16th of this month.

Sorry, I'm going off on a tangent here and rambling, just getting it all off my chest sorry about the ramble.

His behaviour since seeing the paed has deteriorated. He flies into rages at the slightest change in his routine (and by this I mean if i happen to be in a different room to what he expects when he wakes up, if I put the key in the door before he feels I should etc, ANYTHING can trigger him). He is repeatedly slamming his body into the sofa, he is uncontrollably upset by his younger brother crying. I found an ABA service provider here which will also do diagnostic evaluations. We took him 2 weeks ago and have just had the results of her eval back. She has rated him 36 on the CARS2-ST, giving him a diagnosis of moderate ASD. Not a surprise and in a way a relief, but still saddens me greatly.

Long story shortish....We are planning to do a home based ABA programme. I will be one of his therapists to cut down on cost, I am at once eager to get started but also terrified and I don't really know why. What if it doesn't work? What if ds2 becomes jealous of the time I spend with DS1? I already feel so guilty that ds1 takes so much of my attention. How the hell am I going to cope with doing it when I'm so fricking tired all the time? (ds2 wakes at least 2 times a night to be fed still and refuses to sleep after 4am, ds1 wakes for random reasons crying and cannot get back to sleep). At the same time I feel terrible moaning to you all as I have it easy in comparison to some, I have help here as dh works long hours so we have someone coming in every day to help me around the house, and still I feel like I can't cope. What's wrong with me?! Need to get a grip.

Oh my goodness, this is horrendously long, I commend anyone who has got to the end of my self indulgent cr*p. Sorry and thank you!

Hi becs1973, welcome to mumsnet. I have two DC, DS (5.9, asd) and DD (4, NT). The age gap is similar to yours. I was in a similar position to you two and half years ago when ds was diagnosed. We had to spend all our time for DS as he was so difficult, eating problem, sleeping problem, separation anxiety etc, everything that comes with a classic autism diagnosis. But things have changed since then. DS has improved a lot, his speech is still very delayed, but the other problems have since disappeard. We still have a night or two a week when he wakes up at night and can't send himself back to sleep, but it's improving in the sense that he is waking up later and later everytime. Have you heard of melatonin? We have not used it as Ds was quite difficult and we did not think he would take it, but MNers swears by it.

With respect to DS2 being jealous, well, he might actually enjoy it when your doing ABA with DS. He will pick up everything that your trying to teach DS. DD was not jealous of the time we spent with DS at your DS2's age, as I think she just took it as normal. NOw at age 4 she is jealous. DS also hated DD crying, he completely ignormed her and prefered to stay in different rooms to her.

I have to say you are in a good position as you can start ABA so early and your DS is verbal. I have seen a child at DS's school who was non verbal but started ABA at 2, he is as verbal as DS now and has improved beyond recognition and he was text book asd (I doubt that he would have improved so much if he was in the UK and got the crapy intervention we got for DS).

Sorry my post is turing out to be too long. All I wanted to say is that you have the support in place for your DS and I was in a similar postion to you two years ago and we have an almost normal DS now. ABA did wonder for my DS, and you will soon see the difference in your DS if the provider is good.

Hiya welcome to mumsnet, you will find a lot of support here! Sounds like your going through a horrible and worrying tine at the moment!

I only have 1 DS because his difficulties were apparent way before I considered having more, my DS having sleep problems as well I just don't know how you function with no sleep!

Have you got a DP? Could he do one night a week for you so you can catch up a bit or are you BF?

Hi
thanks for your messages. Someoneoutthere, our ds sound quite similar. DS1 also has big issues with food, we are down to toast, grapes, bananas, raisins and cheese....fortuantely all quite healthy stuff. He refuses to try anything else but was quite adventurous at one point, I guess it's all part of the ASD. DS2 eats everything in sight :D

Yeah, i'm still bf, although thinking of stopping just so I can maybe get a bit of sleep if dp can do one feed. Although dp is leaving tomorrow for the UK for 5 weeks so I'm on my own for that time, at one point I was thinking we could all go with him but ds1 just hates any kind of change and his sleep deteriorates even more with the slightest change. We flew to south africa for Christmas (that's where dp was from) and ds1 managed to stay awake for 21 hours straight as he was so wound up with all the changes....as you can imagine he was pretty much uncontrollable on teh flight and I can't face doing that again.

Ok, rambling again, sorry. Better go it's almost dinner time here got to go get stuff sorted for the night shift :) B x

You are definitely in the hardest bit now - I think that 2/3 were the hardest years with my autistic DS. The two bits of VERY good news though are that you have diagnosed so early and are starting ABA (fab) and that he has come out as "moderate". My DSD was diagnosed as moderate and now, at 14, you would hardly know she is autistic at all (mainstream school, friends, predicted As in GCSEs). I know that will not be the trajectory for all moderately autistic kids, but it does give hope. The fact that he has some words is also v good news.The more you can do before he is 5, the better, as that is when most brain developments to do with speech etc are formed. It is harder for you as you have a little one too, whereas at least my girl is the elder. Good luck, come on here for any advice!

hello it does get easier btw my sons moderate ASD and ive two teens NT we have the meltdowns , tantrums, refusal to do anything hes told (some days) and terrible trouble with diet, I commend you actually at least your DS is hooked on fairly healthy foods albeit limited, my ds only wants to eat peanut butter and meat and they musnt touch on the plate and he knows flavour wise if its not the exact brand he likes, he hates certain matierials for clothes , actually he'd rather run around starkers lol and brushing teeths a nightmare he hates the brush, he sleeps little but has improved greatly at the moment and did used to soil but finally has stopped so happy about that thought the day would never come, we rarely go away as if we do he wont eat or sleep while away at all so in summer we have lots days out (not easy either) but whatever the problems and hard work it certainly is, hes the most loving (annoying to his siblings) boy in the world and makes me smile every day , so please look at the bright side if you can and try and ignore all the crap theres always plenty of it poured upon us mums and our DCs and lets all us MNrs enjoy our time with our DCs childhoods so short a time it goes so fast my two eldest DCs are 14 and 15 this week and my youngest whos ASD has also just turned 11 it seems only yesterday i was taking them to nursery and i feel like my DS's childhoods been nothing but picking and poking , appointments and blame pointed at us when we were never given the help when we were crying out for it so early on, sorry im rambling now as i feel quite bitter at the lack of support which now hes 11 there bombarding me with but its too little too late ive worked out all the stratagies now but the hard way in some ways its now hes 11 hes even more challenging as now he has become "aware" of his disability (hate that word) but also is clever enough to sometimes use it to his advantage the little tyke lol he was telling his brother whos birthday it was yesterday "it may be your birthday today but mum says im the special one" i was gobsmacked