I'm livid with IL's and DH's head in sand attitude. Please help calm me down..

[reducedfatkettlechip]

I'm so worn out trying to convince DH and his parents how ds1 (3.11 with poss lang disorder or ASD) is developing differently from his peers and will therefore need help at school. His language is probably about 12-18 months behind, and socially he's like a 2 yr old.

They just refuse to acknowledge any issue, because he can do things like count, read and make basic requests. They disregard that he uses many of the same phrases over again inflexibly and is barely able to tell them his name or carry on a functional conversation.

Normally I just avoid talking about it all and smile and nod when they comment on him. Today we have an important meeting and I mentioned that I wanted to fight for support for him. MIL has warned me that I'll be marked out at school as a pushy mother, and that I'm really worrying over nothing. It just makes me so mad as I feel like I'm fighting this battle alone. They are making me feel totally neurotic - I know I'm not (I have 22mth ds2 who has virtually caught ds1 up language-wise) and it's so upsetting and frustrating to have this conversation over and over again with people who I feel should be supportive. Thanks to anyone who's read this far, I just needed to vent!!

[PeachyTheRiverParrettHarlot]

Is your ds in the syetem?

Firstly, you will be amrked out as a pushy mother yes, and thank goodness- only way to get anything! be the one whose file is at the top of the pile with (I suspect) swear words scratched into the margins.... then you'll get help (can't prove it but reckon thats why ds3's school file mysteriously disappeared on trnafer LOL )


years ago, pre dx's I worked with a Mum of a very severely ASD child (now have 2 and one SEN of my own) and she said to me that men always find it harder to accept than their wives. I don't that its always true but certainly DH took a lot longer to admit ds3's needs and I have seen it elsewhre, dont know why though.

However he does have to get his head out the sand and start supporting you. mArriages fail at a amssive rate in famillies with SN, and he needs wotrk with you nto against you

[cjones2979]

I know exactly how you feel as I went through the exact same thing with my IL's and DH !!

At 2, it was picked up at pre-school that my DS1 was not using imaginitive play & should be saying more for his age (he could only say mama, dada, nana & bubba). My DH wanted to bury his head in the sand & not accept that we needed to get him checked out. My MIL kept telling me that he was "just a lazy boy", and went over and over the same story about a distant relative who also couldn't speak at the same age....it got so boring !!!

Anyway, I had him checked out & the doc wasn't overly worried, told me to come back in 6 months if he still wasn't really talking. I took him back after 6 months & was then referred to a Paediatrician.

Whenever I mentioned the possibility of ASD, my DH & IL's were very quick to tell me I was worrying over nothing, there was no way he was Autistic because he looked us in the eyes, was affectionate, could count etc etc.

In the end, I decided to follow my maternal instincts & do what I felt was best. He was diagnosed with ASD aged 3 (he is now 5.8).
Even after the diagnosis, they still told me that there must be a mistake (cos obviously they knew best of course!).

It has taken 2 years for them all to finally accept the fact that DS1 is different and does have different needs etc.

All I can say to you is, do what you feel is best. You're his mother & probably spend the most time with him out of everyone. It's hard work, but they'll come round in the end. Plus, if you start the process now of trying to get a dx, you can get support sooner rather than later for your son which is so important.

If I can help with anything else, please let me know.

[TotalChaos]

Nothing wrong with being a pushy mother - if you don't push for your kid, then who else will be. As long as it's velvet bulldozer rather than foul-mouthed and abusive mother, then bring it on. With MIL I would just operate on a need to know basis with info. With your DH it is obviously more awkward. Has he been to any SALT/nursery meetings to hear an impartial professional view?

[mysonben]

You poor thing, i know how bad and defleated those comments from relatives can make you feel. I get them too along with their head in the sand ,unsupportive attitude. And it hurts doesn't it!
Sometimes i think half of the battle would be won if only those close to ds could open their eyes and help constructively instead of giving unhelpful advice and stupid comments.
And how tiresome and frustrating it can be to constantly having to defend your judgment and point of view concerning your ds!

I feel so alone at times with this. Even the people who do accept ds is different (like my mum and my sister and of course DH) just don't get it fully, they still say :"he'll grow out of it" or "wait until his speech catches up" or "so and so didn't speak until age 4 !!!"
Totally ridiculous as if ds'speech delay was the only issue there.

I'm not helping by having a rant myself
I wish i knew the only and only answer or magical way to make them get the point, but i don't.
Sometimes i 'd like to be firm in my stance for ds'problems and take no non-sense and tell them i'm his mum and i know him better than all of you put together so give me a break! [angry}
But i'm a wimp... and i take it all in and bottle it up ! Not good.

Try telling your mil you are not a pushy mum but a mum who wants the best for her son.

[reducedfatkettlechip]

thanks everyone! I'm a bit calmer now. cjones, my situation is spookily similar to yours, except the relative who didn't speak was actually my DH, who spoke in jargon until he was well over 5. I think a lot of this has to do with the fact that the IL's adopted the "wait and see" approach for him and fortunately all was fine (not judging them at all, things were very different 30 yrs ago and they wouldn't have had the same access to help that we do now).

I just can't assume that ds will be the same as DH, as if he isn't, we'll have lost so many years of possible intervention time.
I wonder how much of this attitude is due to their guilt. I do normally drip feed info to the IL's, but they've caught me out today.

I do sometimes worry for my relationship with DH. He tends to assume I'm fussing and mollycoddling ds while I don't think he really understands the extent of his issues.

[reducedfatkettlechip]

thanks mysonben, I think it's such a difficult situation for anyone to understand unless they've experienced it (which is why I love coming on here!) I must have heard it all when it comes to stupid comments, I've learned to filter out most things, and try only to listen to people whose opinion is backed up by some knowledge.

Totalchaos, yes DH has been to some meetings but he completely leaves it to me, as I've done the reading and research and spend the vast majority of time with ds. I've tried to get him to read up on it too, but he says there's no point as I do enough for both of us. It leaves me feeling quite alone when it comes to any decision making.

I'm a worrier by nature, so I think the stealth nature of ASD symptoms are particularly hard to cope with for me - I just want to know what I'm dealing with! We don't have a dx and I'm wondering if starting the process of getting one would help everyone come to terms with this.

[cjones2979]

He will come round. At the end of the day, he wants the best for your DS, just as you do, it's just unfortunate that he has different ideas of how to do this.

I had to sit my DH down (like you would a child. Don't forget, he is male after all!) & basically tell him that I knew that DS1 was different to his peers, (after all I was the one who took him to & collected him from nursery), and that I may be worrying about nothing, and he may catch up eventually etc etc, but to be on the safe side, in case of developmental problems in the future, I wanted him checked out now, so that if he did need extra support at school etc, we were already on the right path to getting it.

Just let him know that you need his support. Tell him you feel a little bit "ganged up on" by him & his parents, but things were very different when he was a child, and you just want to err on the side of caution when it comes to your DS.

Good luck.x

[cjones2979]

RFKC - Just read your latest message. I can completely sympathise with you with regards to your hubbys comments !! I still get comments like that from my DH & my DS was dx over 2 years ago.
I still go to most meetings by myself, or with one of my parents. (Do you have your family close by ?? Could you get someone who does understand your worries to attend meetings with you for support ?). I am the one who does the research etc. I have ended up turning the telly off and reading out any info I find that relates to our situation because he won't read it for himself. I also ask him questions about what I have just read to him so that I know he was listening !! lol
These bloody men don't realise how difficult they make our lives do they ?!?!?!?!

[jammydodger]

I had this a bit, I thought for ages, even when DS1 was a little baby, that things weren't quite right and was told by DH that I was being ridiculous - it didn't even help that I'm a SALT and worked with kids with ASD, it didn't seem to make it easier for DH, and we had many heated arguments..
But once we had a diagnosis, things really changed, and made it particularly helpful when explaining to the in-laws...
A diagnosis, if you can get one, can lead to a much easier life in some ways.

[Barmymummy]

Oh god I could have written your post RFKC. I too am a huge worrier and am finding the constant unrelenting worrying far more of a problem than DS's ASD traits . DH is also a "don't worry he'll be fine" person and so is my dad. Luckily my mum is a huge support as my dad we suspect has Aspergers so gets very agitiated when we talk about DS.

I too am the one doing all the reading (obsessional apparently!), childcare, coping with the dreaded pick ups from playschool where I get myself into a right stew beforehand etc etc so I know how isolating it can feel.

No advice coz I am suffering the same but just wanted you to know you are not alone, x

[lingle]

hi ket! Hope the meeting went well. Do you know now what level of support you can expect for September?

[reducedfatkettlechip]

thanks so much everyone, your comments are really appreciated. I'm glad it's not just me, but also sorry that any of us have to go through this stress. The "don't worry" crowd are good to be around sometimes, but if you feel they don't have any basis to reassure you, it's difficult to take any comfort.

Hi lingle! The meeting went pretty well thanks, our SENCO is great and came up with some great ideas for working on various issues with ds. The gist of the meeting was that ds is felt to be academically pretty able, so while he is coping with classwork, and is apparently functioning fairly well socially at school, we just don't qualify for a statement at all in our region, despite his language issues. They are keeping him on Early Action Plus and he'll be regularly monitored. I tried to delay his school entry (yet again!!) but was told a flat no. They feel he's ready to go into reception and that he'd probably be bored if he spent another full year in pre-school(!)

They're also stepping up SALT provision as this seems to be his major stumbling block. No further on with dx, he's not felt to be a clear case of anything as his language difficulties could be presenting social difficulties. Am strongly considering the ICAN private assessment that tclanger went for, as I do feel a need to know what we're dealing with.

[fatslag]

This paternal denial thing is a nightmare. DH and I have fought about ds1 now for nearly 5 years. We got a diagnosis in January and DH still doesn't want to accept it fully (I quote: they were looking for autism so they found it. You influenced them.")

[reducedfatkettlechip]

fatslag (don't like typing that, am sure you're not!) I could totally imagine DH coming out with that kind of comment. Why he thinks I would want to exaggerate ds' issues, I don't know. It's not as if I don't have enough to keep me busy without the endless round of appointments!!

[lingle]

I'm glad he is academically able Kettle. It opens many doors, though it also makes it harder still for other people to understand that there is a language problem.

DS2 is becoming very keen on his letters (has seen the kids going into reception doing "words" and can write his own name and finds learning the letters easy - tries to do spellings with DS1 every morning). I worry that once he learns to read he'll be even less inclined to get to grips with hard, non-visual human conversations, IYNWIM so I don't go out of my way to encourage it.

Still, he had a 2-minute long conversation with a very verbal girl in the car today about where poo goes....... we live in hope....

[RaggedRobin]

it is really distressing to have to constantly argue with the people you need support from on this issue. when my mum was at the "what a lot of rubbish" stage, i just told her that i found that kind of comment very upsetting because it made me feel as though i was wishing problems on my ds. she and my dad have been fine ever since. dp is also supportive as he comes along to meetings, although it is me who does the obsessive researching

we've finally been referred after a six month wait-and-see limbo, so are about to begin the assessment procedure, which i am hoping will clarify things for us. optimistic? moi?

[lingle]

I've pretty much given up on ever "really" getting clarity about DS2. If they diagnosed ASD, it would be the NHS's "triad" ASD which I have major issues with. And if I took DS2 to see Stanley Greenspan (whose diagnosis I would - shock!!! - accept) we would have to live under a bridge for the rest of our lives to pay him.

[RaggedRobin]

i was trying to explain that to my mum the other day, that if we got a diagnosis here, it would be from a much broader "spectrum" than i think would be acceptable in america, if i've understood the greenspan threads correctly.

glad to hear the meeting was positive, kettle.

[lingle]

suspect it goes in this order of willingness to hand out the ASD DX:

1. Greenspan type people
2. NHS doctors
3. most US doctors

because of the issues with the US insurance based medical industry

[cyberseraphim]

Both US and UK use the same DSM criteria (US in origin). I think the dx rate is higher in the US - including the use of PDD NOS which is not common here. Overall, in both countries the spectrum has become wider since the DSM criteria (1994 ish?)

[RaggedRobin]

so i didn't understand the greenspan threads! i assumed that the greenspan diagnosis would be more prevalent in america.

[lingle]

I don't think so Robin. I think there are huge and quite bitter debates over there.....

[RaggedRobin]

i'll be avoiding those then...

[lingle]

wise woman, and if you can figure out how to distract me from them please let me know!

[cyberseraphim]

I've never heard of anyone being dxd as 'Greenspan' although to be fair, his approach is a good one as it is looking at the actual problems and deficits and not worrying about which box the problems come from. I think we do get too fixed on the dx sometimes which causes professionals to look for problems that the child does not have and for the child's strengths to be downplayed because they don't fit the dx. Having said that, milestones in development are important so I am not saying that being wary of a dx is the same thing as 'denial' - which I am not keen on as a concept anyway.