Here some suggested organisations that offer expert advice on SN.

Will SN eventually be picked up?

(44 Posts)
DetachedandDepressed Mon 25-Feb-13 11:13:56

I'm not sure if I should be posting here, but I have had some advice on the Step-parenting board after venting my frustration and the responses I have had have led me here.

My DSS (age 9) doesn't seem to be developing in line with his peers and some of his behaviour is having a significant impact on the whole family. It has been suggested on my other thread that DSS would benefit from being assessed for Aspergers. (full explanation here)

My DP's solution is to accommodate all DSS "needs" no matter how inconvenient, while at the same time, he doesn't seem motivated to seek support or additional help - he just seems to accept that "that is the way that DSS is" and will continue to go out of his way to accomodate DSS.

I have two questions.

The first is, if DSS's obsessive, and rigid behaviour is the result of a special need, will it do him any harm in the long term to accommodate all his "needs" at home whatever the impact on others? I worry that it will make it harder for him to deal with real life as he gets older because not everyone will accommodate his "needs" like we do.

My second question is whether, if DSS does have a special need, will it eventually be picked up by professionals in his life? Are special needs always picked up outside the home eventually? Although both his parents accommodate DSS unique behaviour (often at the expense of themselves and other family members) they don't seem motivated to seek professional support. They seem to have decided that it's nothing to worry about or in any way of concern, and that it will resolve itself in time.

BumpingFuglies Mon 25-Feb-13 11:16:23

No advice OP but very interested to hear any answers as am in a similar position. Sounds very stressful sad

TimidLivid Mon 25-Feb-13 11:31:27

it will get picked up as he turns into a teenager if it affects his schooling, they tend not to do much if you don't seek help or if it does not affect their schooling. Only from my experience but the older me ds got the more obvious it became so it became unignorable and the gap became an abyss as he got to 11 years old and the socail lives of his peers suddenly grew exploded into social teenager and he seemed odd and awkward even more. this may nto happen to you dss. if he gets on okay at school and attends does his work, and your dp is coping at home and does not seek help then they won't do anything.
it could be that accomodating his needs is the only way for him to cope and if your dp was to suddenly stop it wouldne tteach him the world is not like that it would mean that no where was 'safe' adn he woudl then maybe stop coping at school as ti would all be too much. I got the same things said to me when my son was young, but if I was nto to look after him too mcuh and ber accomodating he would not cope and I treat my other chidlren differently. its nto a parenting thin, autism, its a neurological difference and just changing your parenting cannot fix it. parents often intuitively knwo how to handle their aspergers or autistic child . consequences don't always have much meaning for autistic chidlren so right there you have to have a different approach, and the rigidity is trying to make sense of a chaotic world a coping mechanism if you try and provoke them out of it it jsut results in upsett and taking control awayy from them, your dss already lives in the real world, but home has be a sanctuary, as belive me when they are a teenagers the real world does come to them . i hope I have helped, I knw where you are coming from, I used to get confused before I realsied abotu my son when he was 8 and would be rigid or not respond to boundaries and rules, and stirct parenting I was confused, I read aspergers by tony attwood and found my son. I finally believed what the shcool had told me since he was7 that he was on the spectrum. I hope I ahve helpd and not sounded patronising and may be totallly wrong but thoguth I woudl post

IME If they think they can get away with it, professionals will fall over themselves denying need as support costs money and the law states that identified educational needs must be made.

IMO, children with SN needs to be taught as many skills to survive as possible as they will almost always outlive their parents and that this work needs to be done as young as possible as they are a) already behind and b) have more to learn as they don't pick things up instinctively like their peers and c) getting them to put in the work to learn skills is easier the younger they are;

TimidLivid Mon 25-Feb-13 11:38:50

I know how hard it is when it seems everything revolves around this child, but it just does, because everyone else can cope , and the rigid difficult one cannot. its awful the guilt I feel for his nt sister, it restricts our lives in a lot of ways, but he was adn still is at 13 my beautiful wanted baby boy and I am glad he is here, I just wish things could be as easy and intuitive for him as they are for everyone else. Only thing I think is that it might be helpful to get your dss diagnosed to bring some clarity so that the family could learn more about it and understand him better and help him to cope when out in the world. and in case he finds high school a nightmare although he may be fine, so that he would get extra support. a lot of children with asd are fine at high school and do well, unfortunatelly not in my case so diagnosis at 11 was crucial for him and my family life

DeafLeopard Mon 25-Feb-13 11:45:54

Starlight "IME If they think they can get away with it, professionals will fall over themselves denying need as support costs money and the law states that identified educational needs must be made."

^ ^ ^ This ten times over.

OP if you have concerns then it is worth seeking help and support for your child yourself.

Ok, crap analogy but if they had never learned to walk and you didn't seek help, but just carried them everywhere, you would be doing them no favours in the long term, why would it be any different with hidden disabilities.

Handywoman Mon 25-Feb-13 12:00:39

No, SN are not always picked up when parents are able to compensate and learning is unaffected (more power to the parents' elbow, if this is the case right now). It is advisable to push for referrals and assessments, however, in case the problems become significant as he matures (and if he matures at a slower rate from his peers, the problems could grow and his self-esteem and academic achievement could suffer). Reason being: assessment can take years on the NHS. To maximise support in the education system, recognition of problems and/or diagnosis on the NHS will be required. If referrals are made now there is everything to gain and nothing to lose.

DetachedandDepressed Mon 25-Feb-13 12:25:03

OP if you have concerns then it is worth seeking help and support for your child yourself.

Unfortunately, as he is not "my" child, I am powerless to do anything but stand by and accept his parents decisions, or in this case, lack of action.

Finding the balance between meeting DSS's needs without additional support and ensuring that my own DD is not significantly disadvantaged is becoming more difficult the older that DSS gets; but my priority has to be my own DD, no matter how much I want to support my DP and his DSS.

bassingtonffrench Mon 25-Feb-13 12:39:17

HI,

Read your original thread and I think this sounds like OCD rather than Aspergers. The two are linked but are not the same. OCD is far less likely to be picked up unless it gets really bad, especially if it does not express at school.

your original question about accommodating his 'needs' (or his obsessions, which is what you are implying) is a difficult one. Evidence about what helps children with OCD is patchy. There are two schools of thought.

one is that you pander to the 'needs' even if seemingly mad or unreasonable because this reduces that underlying anxiety which enables them to cope with life. Reducing the anxiety may also in face reduce the need for rituals and routines in the first place.

The second school of thought is that you teach the child to challenge their obsessions through CBT type approaches because accommodating the rituals only fuels them.

Personally I have a younger child with these tendencies and would favour the first option. I think Timidlivid speaks a lot of sense. But there's lots of evidence that CBT works and may well be appropriate for a 9year old.

I think parenting him at his emotional age, rather than his actual age is a good principle in general.

Agree that your own DD has to be your priority.

But equally, I don't think you can change his ways just by insisting upon it.

Good luck. I feel for you and him.

TimidLivid Mon 25-Feb-13 14:47:29

I also agree your dd has to be your priority and I feel for you my brother has ocd and I used to be so hateful when I was a teenager and my parents used to pander to him, but I understand now. I asked what help he got and he says as his is with doing laundry and emptying bins and cleaning they told him to do these things on a different set day a week so not do it over and over, but they dont tell him to try and stop, its caused by beign anxious and needing to stifle that feeling, so trying to stop it wouldent help.

zzzzz Mon 25-Feb-13 14:49:22

There is nothing to suggest that even with additional support the child wouldn't need significant accomodations from his family to function. In fact it's highly likely that his parents have investigated what is on offer and don't think it will help.

If you feel having a step brother with additional needs is going to disadvantage your own child, I think ultimately you have to decide what sort of person you are? Walk away to protect your own, or go the extra mile to have this child part of your lives? I doubt anyone here would say living with a sibling/child with sn is easy, but then again "easy" is not the be all and end all.

auntevil Mon 25-Feb-13 14:57:56

OP, family are just getting a dx of aspergers for a family friend in his 40s.
His mum always "accommodated" him and his anxieties and obsessions. She is not always going to be around, and this is what has prompted the referral.
So on the plus side its never too late. On the negative side, no lots of SNs go undetected.

TimidLivid Mon 25-Feb-13 15:16:05

she is worried for him too that he is stressed and not happy its not just about her dd. could you not get a book about aspergers and show your dh and tell him you are worried that this is what is causing his difference and maybe it would help everyone to get a diagnosis. If he won't listen there is nothign you can do me and my dh were in denial for a good few years too, we had to see it for ourselves. I saw yuor other thread needing post it notes to remember everything which are visual cues and having problems dressing and the otehr stuff says aspergers to me too

DetachedandDepressed Mon 25-Feb-13 16:34:08

In fact it's highly likely that his parents have investigated what is on offer and don't think it will help.

If you feel having a step brother with additional needs is going to disadvantage your own child, I think ultimately you have to decide what sort of person you are?

This is the sort of comment that I feared - I wonder whether it was a good idea to post here?

Why would my DP lie to me? Why would he tell me that DSS teachers and Dr don't have any concerns, and have never mentioned SN, if they have actually told him that there is support available and he has decided that it won't suit DSS or our family?

I just thought that if DSS does have SN, it is better to provide him with support and accommodation that is advised by experts, rather than leave it to guess work or what feels right. I thought that the principle behind supporting DC's with SN is that there is consistency? is that not the case? At the moment, DSS has very different support from either parent - will this be of benefit to him?

As for my DD - she is one of the most empathetic people I know, far more so than I am - but it's not my place to suggest that she is empathetic towards DSS because he has a SN - especially when his parents do not believe this is the case. It's very hard to explain to even the most tolerant of DC's that her needs come second because "DSS gets to do what he wants to do".

bassingtonffrench Mon 25-Feb-13 16:48:47

I think you may be overestimating the role of 'experts' as others have said. unless you are prepared to pay privately, which might be a good option.

of course your DDs needs to know she does not come second BUT different children require different parenting and you might just have to learn to live with that.

he is not with you permanently so you have the benefit of 1.1 time with DD which Im sure helps.

TimidLivid Mon 25-Feb-13 16:55:18

I get what u mean, hope ur dp can get where u are coming from . It sounds like u all have to tiptoe around dss but aren't allowed to say look this is unusual this may be sn .
So ur dd just thinks he has to come first with no real explanation as to why. And that if there was a diagnosis u would know better how to deal with it and so would his parents, so u just want clarity

PolterGoose Mon 25-Feb-13 17:01:31

I can see how it is very difficult, however, he is your dp's child and as a result he is a part of your family. There may be little things you can do to make it easier when he visits, visual timetables can be useful and can reduce anxiety. Does he have a clock in his room and can he tell the time? If he is ritualistic about breakfast give him the job of setting the table the night before, agree on breakfast time and all sit together. Create and encourage a relaxed family life so he feels part of it and maybe he will loosen his control?

If he is on the autism spectrum he will probably struggle hugely with change and spontaneity so discuss and plan and give lots of warning of what is going to happen, TBH this might be a good idea anyway. Does he have any special interests? Have something special related to it/them at your home so he has something to look forward to. Make sure he has time alone with his dad, this is really important in my view.

It is only a couple of nights a week, it really isn't much time at all, your dd has you and dp all the time so a little bit of give wont harm her.

DetachedandDepressed Mon 25-Feb-13 17:06:58

It is only a couple of nights a week, it really isn't much time at all, your dd has you and dp all the time so a little bit of give wont harm her.

This isn't the case - DSS is with us four consecutive nights every fortnight (court ordered), my DD is with us every other week and three nights overlap with DSS, including every weekend - so it is only 4 school nights every other week that she has with just me.

I wonder if both DC's would benefit from more time apart rather than sharing - but how to implement that when there is "no reason to" is tricky - if DSS had a diagnosis, it would be a lot easier to make the changes to accommodate his needs.

LimboLil Mon 25-Feb-13 17:07:54

Hi it must be frustrating but I think all you can do is wait for the parents to see it. I have a friend with a little boy same age as mine. I am pretty sure his is aspergers and school did have a word with her in the beginning as they did me about my son. My son is now diagnosed and we are moving forward with statement etc and I'm so glad we went through with it, it's quite a relief to know for sure. My friend's son isn't affected as much as mine, he doesn't have meltdowns etc, but I think his differences are going to become more apparent as he gets bigger. I'm not sure if she is in denial or not, I don't try to influence her about getting him checked and I don't really talk to her about my son either anymore as it seems to turn into her comparing hers against mine and concluding that her son isn't! You could on the quiet read up on some strategies that might help when he is at your home and even explain to your child that he struggles with some things, so that it doesn't become a cause of resentment for her.

LimboLil Mon 25-Feb-13 17:07:58

Hi it must be frustrating but I think all you can do is wait for the parents to see it. I have a friend with a little boy same age as mine. I am pretty sure his is aspergers and school did have a word with her in the beginning as they did me about my son. My son is now diagnosed and we are moving forward with statement etc and I'm so glad we went through with it, it's quite a relief to know for sure. My friend's son isn't affected as much as mine, he doesn't have meltdowns etc, but I think his differences are going to become more apparent as he gets bigger. I'm not sure if she is in denial or not, I don't try to influence her about getting him checked and I don't really talk to her about my son either anymore as it seems to turn into her comparing hers against mine and concluding that her son isn't! You could on the quiet read up on some strategies that might help when he is at your home and even explain to your child that he struggles with some things, so that it doesn't become a cause of resentment for her.

LimboLil Mon 25-Feb-13 17:11:20

ps I do get what you say about it being awkward with your dd. I only got diagnosis for my son very recently but life was getting increasingly awkward before that and he is only 5! At least I can now explain to my other son why life isn't always fair. He still moans about it, but he does understand a bit better!

zzzzz Mon 25-Feb-13 17:23:23

I'm sorry my response was the sort of comment you feared. I wasn't suggesting your partner had lied to you shock. What I was suggesting was perhaps they had discussed it and felt the method of support they chose was the appropriate response. He obviously has discussed it as you now say he has talked to both GP and teachers about his sons differences.

It's perfectly possible that the child juggling two households with different expectations and additional step family members with their own needs IS struggling more than he was. It's also possible that with the support he gets at home he is coping just fine. Dx won't change any of that. There is only really a need to dx if it will help the child involved.

Consistency is important for all children, as is acceptance.

There is no reason why your daughter should feel she comes second, or that her needs should be marginalised because of her step brother. The vast majority of the parents of sn children on this board also parent nt children, it is different than having a family without a disabled member, but not less.

PolterGoose Mon 25-Feb-13 17:30:22

Did you read all of my post? I was trying to be helpful confused

How old is your dd?

DetachedandDepressed Mon 25-Feb-13 17:33:16

It's also possible that with the support he gets at home he is coping just fine

But in my (admitted inexperienced and unrelated) opinion, he isn't "coping just fine". He displays physical anxiety, withdrawal, unhappiness, and a lack of enthusiasm for life.

If he is actually unhappy despite the fact that everyone (at least in our household) is bending over backward to accommodate everything he says he needs, then presumably, we aren't actually meeting his needs - just what he thinks he needs, in other words, what he wants.

PolterGoose Mon 25-Feb-13 17:41:30

But is he exhibiting all those signs of anxiety everywhere or just at your house?

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