At beginning of the road, frustration....

[Triggles]

We're just new to this... although we've had some concerns about DS2 for quite some time. We're going to GP today to get referral to paediatrician. The school senco has already started things in motion on her end as well. DS2's teachers job share, and while one teacher seems a bit less tolerant, the other is brilliant about doing everything she can to assist him.

But in making the list of things that we've been concerned about, I waffle between feeling depressed and frustrated. I see this long list and think "how could I not have seen all of this sooner?" But I guess we did, as we brought it up time and time again to different GPs, who just brushed it off as normal development or "all children develop differently - that might just be one of his little quirks." But I'm cross with myself that I didn't push that much harder and allowed them to convince me that everything was okay, when clearly it wasn't.

And I feel like such a dreadful turncoat - writing all these things down about him that are bound to look negative (some of them anyway) - he's such a lovely little boy, I feel like I'm betraying him and spilling out all this information. I know it's important and needs to be done, but it's so depressing. I think I'm going to make a list of all the good things, just to make myself feel better. Sounds silly, I suppose.

Is it just me? Have others felt the same way?

hi Triggles, yes I was just like you when ds started school and problems appeared.
I too had seen stuff before and even raised issues with hcp but they all said about kids developing at differing rates.
I really thought my ds was just immature and would grow out of it all and now have to accept that is not the case.

You are doing the right thing and I hope you get the help you need.

We are three years down the line and have one dx of adhd and are on track for an asd dx pretty soon.

And as everyone says on here he is still the same child you love today and tomorrow as he was yesterday.

Good Luck.

Hi Triggles, i felt exactly like that when my little boy was being diagnosed (has ASD and GDD and Hypertonia). I found it really upsetting and still do when i have to go to meetings at the school to ensure he's getting the right help.
I made a list of all the good things about him too, and that he could do and just kept them in my handbag for myself (didn't tell anyone).

When the process was finished and i read so much negative stuff that both the proffessionals and myself had wrote i did feel heartbroken. I had to pick myself up though and remind myself that this was only so he got any help he might need and more and that whatever label he ended up with he was still my little boy. Nothing about him had changed, just because a piece of paper somewhere had his name on with a label beside it didn't make a difference to the son i love and care for everyday.

I am glad now that his reports did show him in such a negative light as the support he gets is excellent and the progress he's made is proof of this.

You shouldn't be cross with yourself for feeling you might have missed something btw, or pushed harder. Children do all develop sooo differently, i have 5 (soon to be 6) and have seen massive differences in the way they've all developed.

Hope everything goes ok, take care x

Thank you so much. I think DH & I did say quite a bit "well, maybe he's just immature and will grow out of it..." as well. I find myself not only trying to cope with sorting through the maze that is school procedure and then worrying about going through the appointments and such, but also trying to help DH cope as well. As soon as he heard "possible autism" he panicked, I think. He hasn't had much exposure to special needs stuff at all, and he simply thought "no way" as he associates autism with rocking in a corner somewhere (you know, the TV version, eh? ). We've talked about it some, and I've explained that it simply isn't quite what he thinks, but he's still trying to get his head around it (which I understand).

I feel like I'm at the bottom of a very steep hill up....

It can be so hard understanding/comming to terms with autism, it's hard enough yourself but supporting and guiding someone else through it it also really difficult.

My ex never 'got' his son's autism, he suffered a cross between denial and then saying his son was just a bit 'slow'

He left a few years ago now and i have met and married someone else now who is the childrens step father. He is brilliant but he doesn't always 'get' autism either. It helped him recently watching all the tv shows that were on about autism.

I totally understand that you must feel at the bottom of a very steep hill and i'm not sure what if any advice i could give. As it's early days though maybe things just need a little time, and that your husband needs time to come to terms with things and to learn himself a little more about what 'possible autism' is and might mean. I guess just being kind to each other for now and enjoying your son is all i could think of saying, that and take care of yourselves, and i've always found that frequent visits to this board helps me

Thank you. I will definitely give DH credit, he is making the effort to understand - he just gets overwhelmed fairly quickly (he's being treated for depression right now, and it's rather turned him a bit inside out, I think). He has stated that he is 100% happy to do whatever needs to be done to help DS2. He initially thought the school was saying DS was naughty or slow (well, ok one teacher was rather implying it), and he was extremely aggravated by this. I think he may be feeling still a bit defensive? So I'm trying to give him a bit of time to get his head around it. I'm going to take DS to his GP appointment by myself (DH is staying home with DS3), and I will simply filter through the information for DH so he's just taking the important stuff on board for now. I think that may give him time to adjust to this a little by the time DS2 sees the paediatrician (I hope), in which case then DH will come along and be able to absorb a bit more information.

I do find myself a bit teary sometimes lately, but even though I know he's the same little boy he was 6 months ago, I feel sad as I know this is going to cause him some struggles as he grows up, and I want to protect him as much as I can.

I have totally felt the way you are now.. I knew nothing about asd, nor the red flags that I know ds was waving about.. He was a bit imature, overly chatty and a tad quirky and clumsy.. I was abut shocked when asd was mentioned to me.. More shocked that when we did an asq screener questionaire he scored 30 out of 39!
Because ds wasn't non verbal nor showed "rainman" traits. ( which was the only thing I knew about add at the time)... I just had a little odd bod!

I did spend quite a long time saying " why didn't I see it?" and " omg!" and feeling that I was putting him down when I talked about sone of his issues.

However.. You know what?... It is all okay.. It really is and he is getting the help that he needs and is making great progress!
Now if the posters on this board met him they would spot him a mile off.. But most people who don't know him just think he's a bit shy or quirky.. It's the children who pick up on him being different!.:

ex still says he has no issues at all and I'm a munchausens (sp) mother.. He doesn't accept the dx or what any of the professionals say about him at all.
Dh ( his stepdad).. Is okay with it and also feels guilty for not picking it up sooner :)
be kind to yourself.. Give your dh time and don't feel like a turn coat.. Your being a good mum.

Just want to add that if your dh met my ds he would be put at ease.. It's always the dh's of friend who say " well he talks a lot but he's a great kid"..

I think we all feel a bit like that about our children, but your son is very lucky to have you and your husband. Life could be so much worse for him if he didn't have such loving parents that just want to protect him and see he gets the best.
Despite any struggles your son may have ahead at least with you both behind him he'll also have a lot of love and support and he's a very lucky little boy in that respect

I know exactly what you are saying about feeling bad about writing the things down. I hate talking about Dd3's issues when she is around to because she looks daggers at me and I feel like I am betraying her little quirks to the world.
However, we have to do this to get the help our kids need. If we pretend everything is fine and it will go away we are doing them a diservice. You are right to seek support for your son and you sound like a great mum.
Good luck for your journey down the diagnosis road. .

Well, I went to the GP today. She put her head down on the desk when I asked for a referral and said "did the school put you up to this? you're the fourth person I've had in the last 2 days that have asked for this..." Um... well, wouldn't you logically expect an increase in this just after school starts, when you have a group of 4yo's just starting school???

She rambled on about the school sending me to the GP for a referral so it wouldn't come out of their budget and about the NHS is bankrupt... blah blah blah... So I got a bit upset and said I didn't care about ANYONE's budget - I was there because my son had a problem, and I expected her to help. She stated that he didn't need a referral to the paediatrician, but to CAMHS (?), which is what she is doing. I'm supposed to be signing some paperwork later this week at the school for the school nurse to assess him, as well as language and communication assessment and Ed Psych?? I just feel like I'm wading through completely unfamiliar waters on this, as everyone keeps telling me somebody else should be doing this or that. Time for me to do a little research, I think, as I detest being fobbed off, and I have had enough of that. Cried all the way home, though, as there is something just devastating about the GP saying "he's obviously not normal."

Okay don't panic! :)
CAMHS can and do assess for asd.. Ours have an asd team.. and they can rope in peads SALTs OT and behavioural therapists.
Be prepared for a bit of a wait though.
What the school are arranging will all go towards meeting his needs at school and towards a multidiscaplin team for assessment.

I agree that gp was a bit off having a dig though :(

GP has a point but shouldn't have burdened you with being told it. You're being given the run round and the wrong info, and that's not your nor dc's fault. Schools are just as entitled to refer to camhs as GPs are, mostly they even use the same referral form (go on, google your local camhs & you'll probably find it). They just hate doing it as they have to write loads and often show that they've tried getting an ed psych in too.

Thanks for the information. At least I have some idea where I'm at then now. You'd think they could work together instead of making it more difficult - this is stressful enough.