Will he or won't he

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Will he or won't he

Post  hismama on Thu Sep 29, 2011 10:09 am

I have suspected my son is affected by something like ASD, ADD or ADHD for most of his 3.5 years. Finally about a month ago someone listened to my concerns and we have been referred to a paediatrician for an assessment. The early intervention teacher we saw from group special education pointed out some of his traits that could indicate to ASD, but also said she could be totally off track. The more I read and hear about ASD the more confused I get! Some things make it seem glaringly obvious that he is on the spectrum, but I suspect he has a pretty mild form. Other times I completely doubt myself and feel like we are going through all of this for nothing. I guess my worst fear is that they say he doesn't, and that there is nothing they can do to help us/him.
Part of me really wants him to have it, because it would make so much sense, and I hope that he would get support for the difficulties he is having. But another part of me hopes he doesn't, because what implications will it have for his future? How will it impact on our lives? But will we have these difficulties anyway, because he is what he is and whatever label we give him, he will still be the same little boy I love so very much...
This is such a roller-coaster, and we have hardly even begun!

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Re: Will he or won't he

Post  sewsable on Thu Sep 29, 2011 11:01 am

ASD can be confusing, it's such a broad spectrum and many of us who aren't on the spectrum still have aspects of it in our behaviour.
As an example, I'm a little introverted and have issues with crowds; however I'm not ASD. My son doesn't have the introverted problem, but has no idea how to play with the other kids and really hates crowds. We have a photo of him in a crowded environment with his hands over his ears. For him it's a noise issue; he has hearing sensitivities, but his ability to cope has improved greatly over the years.
Keep pushing for a diagnosis; I found that having that helped me a lot in helping him to cope.
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Re: Will he or won't he

Post  Jeshiko on Thu Sep 29, 2011 11:48 am

For me I think the diagnosis really does help. It's REALLY REALLY hard to hear at first and for me is still hard to process but I think it is really good for Mikko. He gets a lot of support at the moment and he really does need it.

My eldest, Finn, definately has traits. For him it is obsession, organisation and getting overwhelmed with people getting too close to him. Also he has trouble with fine motor skills. But he isn't ASD and is worlds away from Mikko who doesn't even tick all the boxes. Mikko handles change pretty well and doesn't appear to have trouble with smells, bright lights etc.
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Re: Will he or won't he

Post  hismama on Thu Sep 29, 2011 12:24 pm

William has trouble with change and transitioning. He gets frustrated really easily when things don't happen the way he wants. He can get violent when people don't do what he wants, or don't understand him. This is particularly difficult at Playcentre/around other kids because mostly, other children don't want the same as him!
He is easily excitable and has a short attention span most of the time, other times he gets totally fixated on what he is doing and blocks out the world!
He doesn't like high pitched or loud noises, but he is a very loud and high pitched kid!
A lot of this stuff is typical kid stuff so it's so hard for me to discern between that and what could potentially be a trait! I guess I should just stop getting myself stressed over it and wait to see the paed! Whatever will be will be.
For me, when the EIT suggested ASD, I could have hugged her. I have expressed my concerns to many people, all of them have brushed it off and told me I had nothing to worry about. Except I did worry, lots! I KNOW he has issues beyond what has happened in his life (his father and I separated when he was 2, and he has since moved in with his new partner, W found this particularly difficult to get used to). Even with this suggestion from someone qualified, and a referral to the paed...some people still shake their head at me and tell me he doesn't have it, because they know x number of kids on the spectrum, or they have worked with z number of kids with it...which kind of makes me mad, have they not then learnt that it is a spectrum!? If you know one child with ASD, you know one child with ASD

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Re: Will he or won't he

Post  missbee on Fri Sep 30, 2011 5:28 am

Gosh I could have written that myself...its exactly how i felt, and still do feel. Its a double edged sword - on one hand a diagnosis means access to help, and understanding to a degree, and on the other hand it is a label, and it is something that is for life.

And what im finding is that everyone with ASD is so so different. Sometimes when i read others stories, they sound so familiar, but then in other ways so so different.

When is your appointment??
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Re: Will he or won't he

Post  hismama on Fri Sep 30, 2011 10:17 am

We don't have an appointment yet, hoping to go private though.
I am meeting with the EIT next week to go through her report on his assessment, I will ask her then to follow up with the paed, give them a hurry on.

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Re: Will he or won't he

Post  Jeshiko on Fri Sep 30, 2011 11:57 am

Crudefitik wrote:We don't have an appointment yet, hoping to go private though.
I am meeting with the EIT next week to go through her report on his assessment, I will ask her then to follow up with the paed, give them a hurry on.

how'd you get GSE involved before a dx? I am was asking for help in the form of an SLT long before we got a dx and the GP/plunket all fobbed me off. We didn't see GSE till well after dx day Sad
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Re: Will he or won't he

Post  hismama on Fri Sep 30, 2011 12:16 pm

We accessed them through Playcentre. I am also super lucky because we have an educational support worker (teacher aide) for him on session.

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Re: Will he or won't he

Post  Jeshiko on Fri Sep 30, 2011 12:22 pm

Crudefitik wrote:We accessed them through Playcentre. I am also super lucky because we have an educational support worker (teacher aide) for him on session.

that's so great that he is already in the system and getting help without a dx Very Happy
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Re: Will he or won't he

Post  hismama on Fri Sep 30, 2011 1:33 pm

Yea, we are lucky in that respect!
His dad and I took him to see a social worker (through the hospital/public health system) earlier in the year and after she asked me if he "climbed out of windows" or "ran away from me in the supermarket", she assured me that he was fine...I was a little flabbergasted! So yes, very pleased/lucky to have GSE and an on to it EIT on his case now Smile

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Re: Will he or won't he

Post  hismama on Thu Oct 06, 2011 9:23 am

I met with the EIT yesterday, and she handed over her report. More discussions about him ending in her nodding her head and saying "Make sure you tell the paed that!" I guess that mean she thinks it is highly likely that he is on the spectrum.
I finally got hold of the paed this afternoon and they are processing his referral now, so we will get the appointment date within the week. Apparently we don't have access to private assessments here in Palmy, does anyone know anything about this?! So we will be waiting about 3-4 months...I hate having to be patient!

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Re: Will he or won't he

Post  Dearna on Thu Oct 06, 2011 9:48 am

crudefitik wrote:I met with the EIT yesterday, and she handed over her report. More discussions about him ending in her nodding her head and saying "Make sure you tell the paed that!" I guess that mean she thinks it is highly likely that he is on the spectrum.
I finally got hold of the paed this afternoon and they are processing his referral now, so we will get the appointment date within the week. Apparently we don't have access to private assessments here in Palmy, does anyone know anything about this?! So we will be waiting about 3-4 months...I hate having to be patient!



The waits are often not as long as they say. We moved to Hamilton and had to see a new paed and were told it would take 12-14 weeks and we were in the following Thursday. Hang in there. I would strongly suggest starting a journal or log of behaviours, concerns you have, your sons reactions to things,even sleep patterns and eating habits. These appointments can be fairly stressfull (especially the first one) and it can help a lot if you have stuff down on paper. Take care.
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Re: Will he or won't he

Post  missbee on Fri Oct 07, 2011 1:32 am

We went through Palmy hospital and waited about 4 months, so i'd say that was about right. Not sure about private sorry. We saw Dr Hunter and he was very good, took heaps of time with us, asked us lots of questions.
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Re: Will he or won't he

Post  hismama on Thu Oct 13, 2011 5:33 am

Got our appointment today, for the first week of December, not too long to wait at all!

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Re: Will he or won't he

Post  missbee on Thu Oct 13, 2011 5:34 am

Yay not too long at all Very Happy
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Re: Will he or won't he

Post  Jeshiko on Thu Oct 13, 2011 5:40 am

yay!!!
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Re: Will he or won't he

Post  hismama on Sun Oct 23, 2011 12:24 pm

Just wondering if you lovely ladies can give me an idea of what to expect from this assessment? Will it be a series of visits? What sort of things do they do/ask? And for those of you that were giving your children supplements, did you stop them, and for how long before the visit? My son has 10ml of fish oil twice a day and Bacopa complex once a day. I think it would be a good idea to stop them, because I do think they make a difference, but don't want him to have to suffer the deteriorating behaviour for too long.

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Re: Will he or won't he

Post  Jeshiko on Sun Oct 23, 2011 12:31 pm

crudefitik wrote:Just wondering if you lovely ladies can give me an idea of what to expect from this assessment? Will it be a series of visits? What sort of things do they do/ask? And for those of you that were giving your children supplements, did you stop them, and for how long before the visit? My son has 10ml of fish oil twice a day and Bacopa complex once a day. I think it would be a good idea to stop them, because I do think they make a difference, but don't want him to have to suffer the deteriorating behaviour for too long.

Mikko just had one assessment. He was fairly distressed at the time and mostly cried through the whole thing. I don't even remember everything he was asked to do but one was the Dr held out a laminated sheet with 4 pics on it (car, house and 2 others I can't remember) and asked him to point to the car. Mikko just grabbed the sheet and rubbed it on his face Laughing Also asked him to stack blocks but he was too distressed. Mostly the Dr just asked me stuff as Mikko doesn't comply much!

The follow up one we had a few weeks ago Mikko was much happier and did stack blocks and do a bit of scribbling but still wasn't able to point to anything or say anything.

We didn't stop taking supplements but Mikko doesn't seem to show much difference whether he takes them or not. I mostly just give them for my own peace of mind.
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Re: Will he or won't he

Post  sewsable on Sun Oct 23, 2011 2:52 pm

We werent' taking supplements when Ian had his assessment. They wanted him to do things in the assessment, but he wasn't cooperative and in fact spent most of the time climbing on the furniture and scrambling over it like a monkey. Most of it ended up being the stuff I filled in; I think they figured part of it from his behaviour too of course; not many kids his age that good at being a monkey!
We started supplements about a month after his assessment and it definitely improved things.
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Re: Will he or won't he

Post  Dearna on Mon Oct 24, 2011 6:42 am

Christian had one initial assessment.Other than saying hello to him the paediatrician didn't ask him to do anything. In face we were in a exam room, there was nothing to keep him occupied while we spoke to the paed. He climbed on the bed and under the bed and turned on the taps in the sink and the xray viewer and got into the paeds briefcase.We had been sent quite a lengthy form of questions to fill our prior to the visit which he did not really even look at.
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Re: Will he or won't he

Post  Jeshiko on Mon Oct 24, 2011 6:54 am

when is your paeds apt again?

We have Kasper's next MOnday though I am not expecting much as he is only 19 months and other than a speech delay and extreme clinginess there is not much to comment on. Mikko's EIT has already put him on the waitlist for her and the SLT's services so that is good Very Happy
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Re: Will he or won't he

Post  missbee on Tue Oct 25, 2011 3:10 am

I didnt think to stop supplements before the assessment. I probably should of, as it shows the real him!

We had about 45 mins in the room with the doc. A series of questions. ALong the lines of "if this were to happen...what would he do", Or "if you are hurt, does he show empathy". Before that there was a run down on his history from birth. There was also a physical exam.
Mostly talking though, it felt so good to be completely honest about it with someone. I usually miss out details with people because i dont want to seem a failure, so to be brutally honest was great.
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Re: Will he or won't he

Post  teegee on Tue Oct 25, 2011 4:55 am

Our initial assessment for DD1 was went she was 2y10m - and the paed did some tests with her and also asked us questions... we were told that DD1 didn't tick all the boxes and she had an "Expressive Language Disorder" - not ASD... but we were given EIT and SLT help. 18 months later, we went in for a follow up, and no tests were done, just asked us questions, and got the ASD diagnosis - really, I think we should have had it at that first appointment Evil or Very Mad we have another follow up in a couple of weeks to see how she is...

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Re: Will he or won't he

Post  hismama on Mon Dec 05, 2011 12:19 pm

We had our assessment last week, my son was the perfect little angle. The early intervention teacher said if he had acted like this when she saw him, she wouldn't have put in the referral. The paediatrician did say that he probably has autism or aspergers, but couldn't give a diagnosis based on that visit alone, and wants to see us again next year.
So frustrating Exclamation

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Re: Will he or won't he

Post  Jeshiko on Mon Dec 05, 2011 1:16 pm

crudefitik wrote:We had our assessment last week, my son was the perfect little angle. The early intervention teacher said if he had acted like this when she saw him, she wouldn't have put in the referral. The paediatrician did say that he probably has autism or aspergers, but couldn't give a diagnosis based on that visit alone, and wants to see us again next year.
So frustrating Exclamation

oh frustrating! at least they are going to see you again though Smile

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