Jump to content


Photo

Hit Like A Ton Of Bricks!?!


  • Please log in to reply
7 replies to this topic

#1 Deekay

Deekay

    Just arrived (be nice to me!)

  • ASDf Members
  • Pip
  • 6 posts
  • Gender:Male

Posted 11 September 2014 - 03:43 PM

PART 1

Hi everyone. The phrase of ASD was brought up at a Speech and Language Therapy appointment. I had to ask what that meant as I hadn't heard the acronym before. To say the least, hit like a ton of bricks! I'm proactive - and so I signed up and I'm here with queries and questions and a lot of information for your first hand experienced opinions.

My son is now 27 months. I had suspected for some time that something was definitely wrong about a year ago. When he was a year old I did notice a significant delay in communication verbal and physical. This was brought up at the children's clinic. As I have read most often occurring with parental concern, this was just brushed off as him being a lazy boy, kids develop differently, I'm expecting too much of him, etc. Regarding speech I was told to try a number of things (tried everything they suggested and mostly did not go down well at all to a point where it seemed more harm than good) but if by the age of 2 he did not have an absolute minimum of 5 words to come back. He had three by that time so went straight back. Was sent to a speech and language walk-in assessment where we were seen and checked. A full medical history check gone through. A delay confirmed and a referral to a specialist processed. Was also asked to get a hearing test done in the meantime to rule it out before I see the specialist. I did that and his hearing is perfect. The doctor did say if anything he was a little sensitive (egg-shelly) which I put down to a history of domestic abuse - maybe prematurely? He had also said that due to my son being severely ill (septicaemia) for the first two months of his life that the delay could be attributed to the 'absorption time' of a newborn being overpowered by pain. Labour was over 24 hours with water broken before induction and then in hospital for a week after jaundice in first day and septicaemia. After being discharged it was a two month battle of me saying something was wrong and being told he was just being a baby until we hit a 40 degree temp that couldn't be controlled and a trip to A&E.

Domestic abuse has played a massive part in the whole pregnancy (even started abuse counselling for fear of miscarriage due to the fear and stress, plus police, social services and women's aid all involved until resolved - this is a completely different story but I mention it in case it explains behaviour) and first years though I have been able to almost fully eliminate this element - but being his father it will never disappear until he does. We are divorced now so it is no longer in the home. A lot of my son's behaviour was also explained away by this fact as it can be so stressful for children even if they do not witness it - and I was guilty of doing the same explaining away to be honest. He has had to deal with a lot of upheaval and change in his short little life because of it. The worst of it was very early pregnancy and I'm never sure if this could have had any affect whatsoever.

I had suspected Aspergers around Christmas time last year. My nanny agreed. We found him to be disappearing into his own world. Disinterested in us completely. It was all about blocks and building or cars and lining up and you were not allowed to touch anything. You were not allowed to intervene in anyway. Affection and interest in anyone felt lost. The tantrums were beyond anything I had imagined and could become quite physical. I didn't realise that Aspergers meant language wouldn't be a problem for him otherwise would have ruled it out straight away but after working with him focussing on 'anger management' for lack of a better word, and physical emotion, he somehow seemed to improve greatly and snapped out of his little world and joined us again for the most part. It was more the emotional side of things and a willingness for him to come to me and kiss me - and not just me but others too, that made those worries die down. I again put it down to DV as this change correlated with the relief of the divorce being finalised and restrictions put in place which got a lot of it under control. Still the language never truly came and the communication didn't really improve and I found him mostly frustrated at me for not knowing what he wanted

The assessment also required me to rejoin groups for social as children seem to help with language and development better than adults do. I explained that I used to go to groups but they started to end in meltdowns every single time. They were explained away again with many excuses like: the groups are too short, it's always around his nap time, he's usually hungry now, he loves playing outside, he's never been fond of sing songs etc but either way it became too traumatic and our social outings became more like meeting friends at the park where he could run free and eat when he wanted to etc. What I did decide was maybe a pre-school that was a little more consistent and found one that was able to take a 2 year old and had a space for him. I thought the 3 hour session would do better than the short ones and so signed him up for twice a week. The normal tricky bit of getting him acquainted with it but he eventually loved going. Let go of my hand and ran in without a care plus a little wave if pushed. They were aware I had sent him there because of a language delay but reported no unusual behaviour.

Fast forward to now where we were to see our first speech and language specialist - and she reported a concern for ASD. She said it was the bouncing that had alerted her. He headed straight for the puzzles walking over a bunch of toys she had set out for him and was over interested in the lights and switching them on and off. Now by this point his vocabulary had grown slightly - of words he could use correctly and some of them two or three joint word phrases. He started pointing 2 months ago. His word history is pretty much more of a case of saying things once and never again. I used to call it 'banking words' but his vocabulary has grown a little and his demeanour has changed from frustration to relief since he has found the pointing and trying to communicate works. Things have been really good lately and the temper tantrums are very tiny and more whiney and very well managed so if I'm honest I was completely floored by this statement. Of course I know something is wrong but I did not think it was ASD I just thought it was language. She did say that the only reason she was being so frank was because my notes stated I had suspected Aspergers a while back and that instead of sending him to groups to be monitored and then assessed she would rather just refer him straight to a specialist as the topic has already come up.

So over the past two nights I have overloaded on research and realised a lot of things I just thought were quirky are actually markers, but I also realised that a lot of markers have either gone or were never there so I am a little confused.

*Language and communication delay - this was my primary concern and still is. I will say that he has intonation in his babble which I've read he's not supposed to be able to do
*Lining up of toys and foods - yes. He does play with the toys as well
*Grouping things and being a little OCD - yes. I have also read though, that toddlers like order and this is normal behaviour
*Flapping hands - yes. This behaviour hasn't been around for about 6-8 months. He did it when he was excited. That seems to have been replaced by the bouncing. It happens when he is excited or dancing - again I thought this was toddler excitement which I've seen in other children. As with the running around in circles sometimes. It seems he enjoys the dizziness
*Shouting and squealing. Started as shouting when he heard his voice echo (and copying a friend) and it stayed for a while. It then turned to squealing which has diminished a lot since the pointing arrived.
*Walking on toes - periodically. This is more last 6 months or so. Standing at a very young age. Walking at normal age. Very careful and not as 'carefree' or 'worry free' as I have heard. He is also a climber but nothing that I have ever thought to be extreme
*Very quick with technology. Obsessed with buttons. How things work. Building anything into towers. Packing upwards and smashing to bits (more mine). Loves cars, trains, planes etc. - again thought this was normal for children
*Limited "pretend play" - talks on phone but only pretend. Pretend drinks and eats from pictures but will not share these. Will pretend play driving - I thought this was more because I couldn't understand what he was saying and still don't know if it is a copying thing (as I've read) or his imagination. My knowledge of what he is exposed to is sadly limited as there are 5 points of care in his life: me, nanny (live in but we do converse about what he does obviously), preschool (who only mention if there are concerns - of which there have been none but rather compliments on table manners and adaptation), paternal grandparents (weekends) and his father (once fortnightly). All of us mostly focussed on his language and have never thought about whether he is using his imagination and will be a point of focus for all now
*Always thought just very independent. Likes playing by himself. Always seemed a very easy child that way. Did want to know you were around but that was enough - you were to leave him be otherwise. Also though, he does play with his friends - at least it's how I see it. Not fond of sharing but thought that toddler normal. Not fond of taking turns but when I explain in number form seems ok with waiting - although still excited for his turn and sometimes a little impatient (normal range I think). I have had little mouthy moments with him and it sometimes seems he's ok playing 'with' but mostly does it 'alongside'. Kids are different though - he tries to integrate himself with kids. I do think he plays 'with' me as long as it doesn't involve actual toys and he will sometimes visually (eye contact) involve me in games
*Affection developed around 20 months. Gives affection but does not always receive it well. If hurt will not always seek affection and sometimes not be bothered. I never realised what this meant until yesterday: when he first went to pre-school and was freaking out because I was leaving, they tried to physically console him and the first thing I said to them was 'leave him alone until he comes to you or you will make it worse'. I perversely thought he was like me in that sense: I prefer to deal with things in my head and will rather be ok with it before people can talk about it with me or console me about it. Naturally adults and toddlers are very different.
*Food and eating I have very rarely had trouble with. He doesn't seem to have any allergies and nothing more than the normal range of fussiness ie. today won't eat something he may eat tomorrow (carrots are recently off the list but again don't see it as an abnormal thing with toddlers and taste buds)
*Does not ask for food or drink or for anything that he wants but rather waits to be asked - but will ask for help sometimes (yoghurt and feeding) and has placed my hand to help me understand what he wants - rarely but he has made this connection. Recently he will point towards things in a way of asking but it's mostly light switches or buttons
*Never been a problem sleeper. Very seldom have had a fight putting him to sleep where it was warranted (illness or over-tired etc). Will be alone quite happily in his bed though and doesn't call when he wakes up. I now mostly wake up because he's bouncing on his bed. He did have a short period of night terrors but was again told this was normal and how to deal with it and we haven't had a problem for 2 months after a month's worth - though there was significant change around that time that was attributed to the cause and dealt with
*Had bilingual home life until 25 months. Understood and spoke (limited) in both languages. I attributed this to some of the language delay as it is known for bilingual children to be delayed - but not to this extent. I find his understanding quite vast and surprising for the limited language he has
*Has a sense of humour. Laughs A LOT. Smiles a lot.
*Follows instruction to a degree. Sometimes needs visual help or gestures
*Ok with copying vocabulary. This is improving
*Put everything in his mouth to bite until about 2 years. Still happens but not as often.
*Opening and closing doors and drawers A LOT, all the time
*Eye contact (apart from 6 months where I thought Aspergers) seems fine. Responds to name to what I belie is a normal range (tunes me out sometimes but not always)

I don't know whether I'm deeply in denial or very realistic but I don't think my son has ASD though I accept this is a possibility and do know that SOMETHING is wrong. Could anyone advise things I should be specifically looking at or concentrating on to get a better picture of what is happening and what I'm dealing with. I know that any help whether ASD or not could not be harmful so would rather be proactive while waiting for a diagnosis, than wait and be behind when I could have been assisting him all along.

I did ask the doctor if he is to be diagnosed without, would he still be getting the help he needs because that is my main concern - that he isn't left without resources and assistance for whatever his diagnosis requires. Nothing would make me love him differently or less but it is a tough pill to swallow (and I'm still trying to wrap my head around why, because no matter what, he is still the little boy I know and love). The actual diagnosis is less of a concern for me right now (I suppose because schooling is not involved yet) than what I can do to give him the best support he needs

I'm sorry this is so long and thank you for reading and for any advice or comments you may have

I named this 'part 1' as I wrote it a week ago and much has happened since but to find the time to post...

#2 apricot

apricot

    Old as the hills

  • ASDf Members
  • PipPipPipPip
  • 478 posts
  • Gender:Female
  • Location:Cambridge
  • Interests:Walking our labrador, Ben.

Posted 11 September 2014 - 09:00 PM

ASD can be quite difficult to diagnose at 27 months. There is a lot of overlap between 'normal' toddler behaviour and ASD.
DS also had delayed language and lots of slightly odd behaviour, but we didn't get a firm ASD diagnosis until he was 8. We had SaLT help for the language delay and none for the ASD.  



#3 Deekay

Deekay

    Just arrived (be nice to me!)

  • ASDf Members
  • Pip
  • 6 posts
  • Gender:Male

Posted 11 September 2014 - 10:40 PM

PART 2

I know I only posted part 1 today but it was written a week ago and so this is a week later...

So since overloading on info and hours and hours of video and many many resources, observing my son's behaviours, moods, habits, 'markers' etc. now sort of knowing what I am looking for and what the differences *could* be between normal toddler vs ASD and basically I am still on the fence. So completely out of my depth and scrounging around in the dark. Internet can be a blessing and a curse sometimes. The resources are worldwide which is great and some days I am positive that he's just a normal toddler with a speech delay and the next I will see a video and know - 'that is my little boy'

He's started up preschool again this week. First day was your usual clingy and tears but then fine when I was gone and happy enough. Day 2 a little reluctant to let go of my hand. Happy as Larry to be left today. I think it's all normal, if not quite quick at adapting. I spoke to the manager of the school about what was going on and asked her to keep an eye out on things and note anything unusual. They have a little experience in this so do kind of know what to look for. They said they hadn't actually picked up on anything the previous term but to be fair he wasn't there so often but now is going four afternoons a week so they can really keep an eye on him. We did a good hour of watching (without being seen) to see and he was toddling around with the others in the playground. Rode a little tricycle. Took a ball from a little boy who handed it to him and threw it back. Grabbed a little pan and went digging in the garden. Back on tricycle. Threw ball back and forth with teacher. That was first day. Report back from second day was he was bubbly and giggly and he was driving around little cars and they were crashing at the end of the ramp and he'd be rolling around on the floor giggling and laughing away. Think all is well there - and he is incredibly comfortable. Only 3 days but really good I think

The manager spoke to a few parents who are going through / gone through similar process and we all agreed to share numbers and create our own little local support group. Think first hand witnessing and talking with someone is more beneficial and helpful than overloading the way I have online.

Something amazing did happen yesterday though. I bought a little tea set to see what he would do with it and if he would pretend tea party with me. He play drinks out of his normal drinking cups etc but I wanted to see the difference between copying and imagination. In the end I'm not sure if he was copying or using imagination because I did have to show him what to do with the teapot but he played. I was not privy to a cup of tea but his piggy was so that's something. And then... He pointed to the teapot and in a faint little voice I hear very seldom said something that sounded like 'what's that?' It took me a second and then replied 'that's a teapot' very careful not to make too big a deal of it because he doesn't like that and then moves on, but enough of a proud smile and a hand clap to show him he should be proud and I was proud. He then pointed to the bowl and asked the same. I'm not used to his voice so it takes me a second to figure out if it's babble or words but I am very sure that's what he said. That day he asked 6 times for different things, sometimes repeating the word and then moving on - and he pointed with the question twice. It's such a small thing but I was sooooo incredibly proud of him and for us it's a massive step

Anyway, another thing the manager did was provide me with a local number to call and make an appointment for an early years educational psychologist. It's the last Monday of every month so will see when they have spaces but if anything to maybe get a second professional opinion would clear a little bit of the grey area for me. Couldn't hurt and it's not as long a wait as the referral

Sorry again for the long one

ASD can be quite difficult to diagnose at 27 months. There is a lot of overlap between 'normal' toddler behaviour and ASD.DS also had delayed language and lots of slightly odd behaviour, but we didn't get a firm ASD diagnosis until he was 8. We had SaLT help for the language delay and none for the ASD.


Thanks apricot. It's quite a long process isn't it? It also seems quite malleable too as ASD covers such a wide range and changes as the child grows. I think my fears and sadness have very little to do with how he is now and how it is diagnosed as I know I can handle what he has to offer and I know him and all that. I think I am most afraid of regression and losing the essence of him having known him already - I apologise if that insults or hurts anybody and it's not meant to. I'm just trying to say that of course we could manage anything no matter what, but to have your child 'disappear' in front of you must be so very difficult and I'm trying not to fixate on the possibility but it is what I am most afraid of. I apologise if that makes me ignorant so please forgive my inexperience here

#4 Spiral

Spiral

    Old as the hills

  • ASDf Members
  • PipPipPipPip
  • 155 posts
  • Gender:Female
  • Location:Wales

Posted 13 September 2014 - 09:29 AM

Hi Deekay, your little boy sounds as though he has many similarities to my four and half year old ds who has a diagnosis of speech and language delay with mild learning difficulties. Although he great difficulty with following instructions in his toddler years, and is only a little better now, amongst other things.

Like you I was floored when the HV first gave us the impression that she thought it was asd when he was 27 months, I too overloaded on information but wasn't convinced either way, even though a few close friends/relatives could blatantly see these characteristics and had done so for awhile beforehand. About six months later, after alost daily reading and investigation and a very big dose of denial he did something, which I can't even remember what it was, but it was such an obvious asd trait that I could no longer talk myself out of it, and that's fine he is who he is iykwim.

At the moment he has just started full time school and all the traits are still there some have changed and improved. As for the long and exhaustive diagnostic process for asd we are still in it. He's had the ados assessment around ten months ago, and although he scored for having asd they decided to wait and see if socialising at school helped with his social interaction and whether it was the language delay that was causing the asd traits. We are now waiting for questionnaires to be sent out to school and home, as the traits are still there, and have been told that we will only get a diagnosis if the answers on both questionnaires match!

#5 Deekay

Deekay

    Just arrived (be nice to me!)

  • ASDf Members
  • Pip
  • 6 posts
  • Gender:Male

Posted 13 September 2014 - 12:35 PM

Thank you Spiral. Wow I hope that the questionnaires come quickly and you finally get to a point where you have some definite answers and can finally unanimously head in the right direction. It's a scary thing that 2 years in you're still in diagnosis limbo. Fingers crossed for you

Received the letter from the language assessment that I know his pre-school will be getting too. It has some directions on points to work on which I will copy and hand over to his father and grandmother for when they have him. I also called to make an appointment to see the EY Ed Psychologist and they said they would call me back on Monday to confirm where they have an open space to spare for him. Hopefully it will be at the end of this month.

Have a good weekend everyone

#6 Spiral

Spiral

    Old as the hills

  • ASDf Members
  • PipPipPipPip
  • 155 posts
  • Gender:Female
  • Location:Wales

Posted 13 September 2014 - 01:59 PM

Seeing the ed psych is definitely a positive move forward, my sons school are claiming that they have to tick off their boxes before we get to see one. I'm thinking of looking into getting a private assessment done as it would be helpful to have some independent eyes. But good luck to you hopefully it won't be too long a wait.

#7 Huwbert

Huwbert

    Old as the hills

  • ASDf Members
  • PipPipPipPip
  • 869 posts
  • Gender:Female
  • Location:Southeast

Posted 13 September 2014 - 04:06 PM

Hello Deekay

This is the hard part, all the questions and seeking information  and trying to make everything make sense. 
First of all, if you can, take a deep breath and try to 'stop' for a day or 2.
 You are working so hard to do everything for you and your child.  Well done for getting out of a dv situation, well done for being an awesome parent and seeking out everything you  can for your child's benefit.    Try to 'take 5' every now and again, eat well, sleep well, and try to keep your mental strength .

If I could I'd give you a big hug.

We're all here for you, as you go through this.  Try not to panic and remember you are not on your own
HUW xx
 



#8 Deekay

Deekay

    Just arrived (be nice to me!)

  • ASDf Members
  • Pip
  • 6 posts
  • Gender:Male

Posted 02 October 2014 - 05:29 PM

Hi everyone and thanks again. Hope everyone is well.

Much has happened since my last post but most importantly have taken the advice given and I take a step back every now and then so that ASD does not dictate or dominate our lives. Implementing the suggested 'homework' from the language therapist - whether it's him just ready to catch up or the 'homework' I don't know but little man has become much more communicative and socially expressive. For whatever reason it's happening, it's really nice to see. Have had three big events happen in the last two weeks (big for us):

1. Crib to bed: as he'd stopped calling in the morning and my over 2 years of him as an alarm clock left him stuck in his crib and I felt awful. So I started setting an alarm and took the side off his bed. Had the stair gate on his door for three days and then moved it to the top of the stairs so he could come out of his room into mine. He did say 'no no no' as I was taking the side off - wanted him to see and gave him his play tools to help - but was over it once he realised he wasn't losing his precious bed but more gaining freedom to get in and out at will. Had been training him to sleep in the middle with pool noodles on the sides (he's a bit rough) since his birthday in preparation. First night was an hour of running around before the novelty wore off. By the third night he was back to normal. Waking up he enjoyed the freedom of getting his toys out of the chest and playing. It took a few days for him to realise he could leave his room once I had moved the stair gate. This morning (4:30) he came into my room because he had a dirty nappy. First time he's made any indication of the kind. Went straight back to bed. Very quick to adjust

2. He's started pointing to share (as in 'look there') and naming and pointing at things he knows as we walk to school. No longer just pointing to get something!!! Big deal for us

3. First constructed sentence, gesture mixed with spoken, that I understood fully. Very silly but at a little playground. He was on a rocking horse. A little girl shouted to him 'hey boy, come play'. So he looked at me, pointed to me, said 'up', then pointed to the floor, said 'down' and held himself ready to be picked up off the horse!!!

I read somewhere around here that organising everything into a book with dates etc is a good step forward when starting the process. I have realised you do get asked a lot of things you kind of forget so having it all in one place really does help keep it all in order - and has refreshed my memory of a lot of things too

The Educational Psychologist has been booked for 20 October - it's not private and just a drop in without the child present (you book the child into the crèche at the place for your session) so by no means and assessment but more a place where I can take my highest concerns and get an opinion. The info book will help here

I have received his assessment date - 5 November

I have had his progress meeting with his pre-school key worker. She read through all the info sent to her from the language assessment and said she disagrees with a lot of information and that it's a little misleading. She said I should ask them to do an on site assessment additionally as, with the ASD information, and the initial school sign up because of language delay, they've been observing with these in mind and have a very different idea of my sons abilities

I, however, am still on the fence and would prefer to tick all possibilities off the list one by one without discarding anything so that he gets the help he needs without being left behind or stuck on the shelf.

Cannot complain - we have progress!




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users