Explaining diagnosis to one child without scaring sibling. - Mothering Forums

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#1 of 14 Old 01-23-2014, 02:02 AM - Thread Starter
 
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Oh the juggling act when you have more than one child. I'm really not sure where to start on this one though.

 

DS has recently got a diagnosis of Autism, we've talked to him about how he finds some things difficult, and ideas that we feel may help him with those specific areas. We've got as far as letting him know that the doctor we saw felt there is a pattern to to things he struggles with, but haven't yet used the word Autism.

 

However his self esteem is at rock bottom, he's really hard on himself about not being able to do things. We really feel it's time for him to know about his diagnosis, and hopefully begin the process of coming to terms with it. I'm also very aware that it's now on various school & medical records and I would much rather we told him about it ourselves than it come up in a doctors appointment or something.

 

However he has an older sister, who is herself a very anxious child with her own set of issues (in fact my first response to preschool when they suggested assessing DS was they were looking at the wrong child). She has been having some problems with another child in her class, I think from the teachers point of view they get on well and they are well matched in many subjects so are often asked to work together. However this child, lets call him Jim, has a tendency to hit out when he's frustrated/upset and DD has been on the receiving end many times.

 

Recently she cam home with finger marks round her neck form an incident at lunch time, nearly 4 hours earlier! Obviously I've spoken to to the teacher but it seems nothing changes. I still get DD coming home saying she had to give some of her party food to this child or a sweet won for good behaviour etc "otherwise he'll hit me". When I asked about the party food the teacher just said DD offered to share:irked

 

Of course, here's the problem, Jim also has a diagnosis of autism, and I've heard from several class mates "the teachers don't tell him off because he's got that autism thing". His parent came up and said much the same after the strangling incident.

 

So how do I balance these two needs, I feel like DS needs to know, and soon. However I can see it terrifying DD. Right now her view of Autism is a child who hits her and she has to keep calm at all costs. I hate to think what it's going to do to her to feel that way at home too.

 

I feel like I ought to do more about the situation at school too. DD is getting some support from the counsellor and I'm planning to ask that she and Jim are placed in different classes next year.  I'm not really sure what else I can do right now. The last thing I want is to be on the other end of this in a few years time, I already listened to a couple of parents from DSs class ranting about kids with SEN taking all the teachers time, disrupting he class and the usually stuff at a recent birthday party.

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#2 of 14 Old 01-23-2014, 07:05 PM
 
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:Hug We've had similar, milder issues with my kids. DD1 is 11 with anxiety, SPD, and dyslexia. DS1 is 4.5 with a ASD dx along with some other physical issues. There are another boy and girl in the mix as well. DS1 was barely 3 when he was dxed, we've tried to talk to him some about it, but frankly, he doesn't have any comprehension about this, it is just way over his head. We are open about it, have been from day 1, he hears the language spoken around him even if he doesn't understand it. 

 

DD1 is just an emotionally fragile kid. Her only experience with autism was a similar experience to your DD's, a kid at school that DD1 would often try to help but would end up getting in trouble for basically just being there because he was unable to be disciplined. I can not speak to how this should be handled in public schools because this was a small private school that we ultimately ended up leaving when DD1 was targeted by another classmate for very prolonged, severe bullying and we were told over and over again that the other child would not be punished because of her diagnosis. Which ironically was "just" dyslexia (I mean it that way because dyslexia has turned our lives upside down). I think public schools have much less tolerance for this type of stuff so I would urge you to speak up often and loudly.

 

Anyway, DD1 certainly had a negative view of autism back then. She actually told me that the classmate with ASD had brain issues. She really didn't know what any of this was so we had a good conversation about how her brain often worked differently then others and then that left into talking about ASD and how both the boys, our DS1 and the classmate had it but that didn't mean they would have all the same behaviors. There were certainly some tears shed by her about DS1,

 

It's a couple years later, DS1 is almost 5. DD1 has taken a very proactive, protective role of him. Of entirely of her own choosing. They attend the same primary school, the 5th graders are assigned a PK buddy to assist and read to, she made she was given her brother. She also escorts him on field trips and helps with with his lunch. We struggle with night time issues with DS1, DD1 again of her own choosing, has made her bedroom into his as well, and asks me to let her sleep with him every night. They have a very special bond, she can comfort him in a way that I can't even. He cries for her when she is gone and he is the first person that she wants to see when she arrives home. I think that she needed him in all his quirky glory just as much as he needs her if that makes sense. 

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#3 of 14 Old 01-24-2014, 09:40 PM
 
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Of course, here's the problem, Jim also has a diagnosis of autism, and I've heard from several class mates "the teachers don't tell him off because he's got that autism thing". His parent came up and said much the same after the strangling incident.

I am so sorry for your situation. That school's behavior is apalling. If there is any way to get your daughter out of that class or to homeschool, I would seriously consider it. I hope that you get BTDT advice on this. I really don't know what you can do, I'm so sorry that I can't give better advice, but something really needs to change. Your daughter is being abused and her teachers are letting it happen. Please do more about the situation at school if you can. It's only the middle of the school year, the thought of her having to spend another 5 or so months suffering this treatment, which is apparently escalating, is just awful. This boy has already tried to strangle her and left marks doing so- it has gone too far. Does he have to hospitalize her before she'll be protected? She does not deserve to be treated like that. If her teachers are not willing or able to address this behavior in the boy, then she needs to be removed from the situation. 

 

Did she ever try to stand up to the boy? I can't help but suspect that they're leaving your daughter with her because she's taken a more passive role (which is utterly unfair to her). That boy's behavior would likely result in bullying or other forms of retaliation from many of the students, it's easier to leave him with her because it sounds like she's just taking it. If she stands up for herself she may get punished or hurt even worse by him, so I don't know what she should do. I want to suggest she take a self-defense class and learn how to block his hits so that he can't hurt her anymore (she should not retaliate by hitting back, I'm sure you agree), but I fear she'll be punished for doing so. I imagine that she'd be ecstatic to be suspended and not have to be around him anymore, and you don't want her to start having a behavior problem just to get away from this.

 

If she never tried to stand up for herself, I think that you should help your daughter with her passivity, though. It is in no way her fault that she is being treated this way, her teachers should not be allowing it, but she needs to be able to stand up for herself when she's an adult. I say this as someone who also suffers from anxiety and was (sometimes still am) very passive as a result of it, it's easy to freeze up when you're facing conflict, but she needs to learn how to stand up for herself. You won't always be there to do it for you (although you should still be there for her now!). I understand if this gets put on the back burner for the remainder of the school year, but just think about it in the future.

 

Because this boy has autism, I understand why this must be difficult for the school. I know quite a few adults with autism (several who have autistic children as well) who are furious when they see things like this happen. They're not furious at specific people, but at the system that doesn't give adequate support to schools, families, or these children.  Allowing him to hurt people is teaching him that this behavior is acceptable and will only set him up to get in trouble in the future. If he continues treating people like that, what hope does he have of holding a real job or being in a happy relationship? At the same time, it's very difficult to know how to address special needs like this and too often families and schools aren't getting the support they need to handle it. I'm sure that his parents are overwhelmed and they may even afraid of their own child, I've seen too many instances of this happening. If Jim has any siblings, it's even possible he's treating them the same way he's treating your daughter, and the problems at home may be too much for them to put attention on the problems at school. My heart goes out to everyone in this situation- your daughter, her teachers, "Jim", his parents, everyone. Jim almost certainly is not getting the help he needs, his family and his teachers aren't getting the support required to help him, your daughter isn't being cared for or respected. It's an awful situation for everyone.

 

I don't know if having empathy for how the others may feel just as helpless in this situation as you and your daughter do will help you or not. It still doesn't justify letting her be treated this way, but it may help you keep a clear head and remember this is a difficult situation for everyone. I hope that you're never in the position Jim's parents are, and certainly that it isn't to this extent, but it is possible your son may cause problems at school due to his autism, and I'm sure that you'll want people to approach you and your son with empathy. I also don't know if approaching Jim's parents as a parent who has an idea what they're going through would help or not. It may help them have sympathy for your family and help them realize that you aren't attacking their son, but because your children don't know and haven't accepted his diagnosis yet, it would probably be better not to reveal it to them and risk having it get out.

 

For how to approach your daughter, I have no really specific advice on what to say. I would suggest taking a good amount of time when you can focus solely on her and not have to worry about your son overhearing her. Definitely be prepared for an incredibly negative interaction, truly brace yourself for the worst things you could possibly imagine anyone saying, and be prepared to show respect for her feelings no matter how negative and hurtful they may be. Remember that the feelings aren't truly towards your son, they're a result of what she's facing at school. If she doesn't say anything negative, I would gently make sure that she's not keeping it in for fear of upsetting you or because she's ashamed of how she feels about her own brother. Don't assume this is the case, but just let her know that you understand she's facing problems because of a child with autism and understand if she's upset or afraid about her brother's diagnosis. It may take her time to process this, and if she feels safe to come to you with her feelings, it's better than having her bottle it up.

 

I hope that she responds well, though. She may not respond negatively, or she may get over the negative feelings fairly quickly, although I agree with being concerned.

 

If she respond very negatively and it causes a problem at home, I think you'll really need to fix the problem at school. She may not be able to accept her brother until she can get away from the mistreatment she's facing and heal. The book "It's OK Not to Share" has a chapter about handling when one sibling doesn't like another, it may help you. It's focused on when a new baby is in the family, but the advice could still apply. It talks about how to respect the one child's negative feelings, without endangering the other. It's possible you'll be able to access that chapter on the amazon preview without having to buy the whole book to make sure it's helpful.

 

Does her brother know about what's going on with his sister and that Jim has autism? If he is, I would also be incredibly careful about how you tell him. If his only real life example of a person with autism is someone who's hurting his sister, it will be even harder to help him accept his diagnosis. I completely agree with wanting to make sure he hears it from you.

 

I'm so sorry that this is happening, it's really an awful situation for everyone involved. I hope that you can make a change at the school so that it's in a better position to help your son in the future, but your priority should be what your family is facing now. If all you can do right now is help your daughter, that's enough. And I really hope that you can help her, I'm so sorry that I can't give better advice about what she's facing at school, the situation is just horrifying and no one should face that.

 

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 I think public schools have much less tolerance for this type of stuff so I would urge you to speak up often and loudly.


I don't know for certain, but I believe it can be more difficult for public schools because of the Americans with Disabilities Act and public schools get federal money. They aren't allowed to be seen as discriminating against or mistreating a child with a disability, they could be opening themselves up to lawsuits. In another thread, a poster pointed out that a diagnosis is important for special needs kids as, if they have a diagnosis, they can't be expelled or denied education due to their behavior that's a result of their diagnosis. It's possible that, at the school, this had morphed into not being able to punish special needs children at all.

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#4 of 14 Old 01-25-2014, 04:51 AM - Thread Starter
 
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While Jim  has occasionally lashed but over the last few years, it's only been in the last couple of months that it's become a big issue. In part I suppose it's easier to write off the occasional incident when they are younger, but mostly as they've grown and got stronger he can now really hurt.

 

I gather from playground talk that he has had issues with other children, but not sure what as I tend to avoid those sort of conversations where possible. However till the last few months he and DD have got on well both in and out of school, visiting each others houses, going to parties. While she does mention having to stop him getting angry there are also still times she chooses to play with him.

 

Jim does have an older sister, she was at the same school till last year. I wonder if she was looking out for him in the playground and that's perhaps part of why things have escalated this year. Not much I can do about that one but interesting to think through (and bear in mind for DS when DD leaves at the end of next year)

 

Asking for DD to change class is a possibility we'll look into if things do not improve, though I hate to take her away from her friends. Like I say we are planning to request that they are not placed together next year.

 

I doubt that DD has stuck up for herself, and this is an area we are working on, both at home and school. Sillysaplings description of her is right on, she is a very anxious child, very likely to do anything for a quiet life and quite prone to freeze if she can't deal with the situation.

 

It's a good reminder to me to pay more attention to what we are modelling at home, DD often offers to give in to DSs requests and while we do try and make sure we don't let her every time I think we could do better there, and encorage her to start to do that herself.

 

Hmm, I hadn't considered how much DS knows about Jim and the specific incidents, they do both go to the same school so it's quite possible.

 

I wasn't really expecting an easy answer but thanks for talking this through with me, It's helping me see things a bit more clearly.

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#5 of 14 Old 01-25-2014, 02:12 PM
 
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I do think that's part of how these things escalate- it's easy to write it off when they're young and can't do a lot of damage, not just because the damage is low but because so many people don't want to think that children can hurt people. When the child is old enough to do real damage, it's much harder to fix the problem. Without the complications of autism, many parents whose kids start bullying at a young age ignore it or dismiss it until their children become real problems as teens. Because autism is involved, it's possible that Jim's parents and teachers had so many other things to worry about with him that this issue just kept getting brushed aside as "not a big deal" compared to the other issues until it was.

 

I'm sure this is so much more difficult for your daughter because it sounds like she was friends with him and may still want to consider him a friend. It also sounds like your daughter got used to handling his behavior, which is one complicated thing when dealing with people with special needs. It's good that she had the empathy and patience with him to be willing to do this, but at some point it became letting him treat her badly. Special needs kids need people like your daughter who will respect their unique needs and treat them accordingly, but things like this can happen, especially when the child isn't getting the help they need (again, this isn't any individual's fault, it's very hard for parents and schools to get support to handle this). I'm very sorry this is happening, your daughter should have learned that her actions were a good thing, not ended up the victim of violence because of it. :(

 

I tried looking into how to handle this. This post talks about aggression and violence in children with Asperger's and Autism, and gives some suggestions on how to handle it. This article asked for advice for someone with a violent, autistic child they have to watch. There are quite a few comments that may help. One comment suggested Amy Yasko's protocols (I know nothing about these). This comment seemed like it may be relevant: "With Jeremy, who is 24, the only times he has been aggressive is when he is having PTSD. If he is having a flashback (and we can tell because his eye pupils change) he will strike out at anyone or anything that is close by till it is over. It is impossible to stop a flashback - it is visual and real to people and they think they are being attacked again/still. This is a result of sexual abuse he suffered (outside the home).

The PTSD is more present when he is anxious, nervous or depressed. Or when he is greatly disappointed by people he came to trust. Also, if he has a support staff person that he feels could not 'protect him' in case of a 'bad boy' approaching him."

 

It wouldn't surprise me if this may be somewhat what is going on, hopefully not the sexual abuse, but it's likely that he's being triggered by something. A few people in the comments pointed out that generally when autistic children (all children, really) act this way, there's a reason. You mentioned that his sister is no longer at the same school, it is possible that she was looking out for him or even helping him handle things at recess, and now that he's on his own he's overwhelmed by school, especially because the worst incident happened during recess. It's not uncommon for autistic kids to lash out at whatever's closest (people, items, themselves) and your daughter is just caught in the cross-fire. He also may find group work very stressful. Autistic children are also usually very sensitive, he may be having other physical problems that he isn't communicating well. I've seen people who've used elimination diets to help their autistic child. I don't know if Jim's parents would be willing to do this, assuming they aren't already, but it is something to keep in mind for your child. I believe there are a few parents on here who are doing this, and I'm sure you can find information about this.

 

There also can be a problem when these behaviors are reinforced. Which, right now, they are being- Jim is facing no negative repercussions for violence, and is learning that he can get things if he uses or threatens violent behavior. While I do believe that the outbursts initially were caused by stressors, and that many still are, it's also possible that some of them are a result of learning that he can get his way with violence. This is obviously a horrible thing for him to learn.

 

Hopefully you can get the teachers to stop putting your daughter and Jim together and that they respect that he's causing problems for her. I agree about not wanting to remove her from her friends, changing classes mid-school-year would be stressful for her, but if there's no other options it's better than leaving her to face worsening violence. Even if they implement things to help Jim more, it's not fair to leave your daughter in a situation where she may be hurt just on the hope he'll stop being violent. Obviously you aren't required to suggest any of these things, I'm bringing them up in part because it may help you if you ever have problems with your own son. If you want to suggest ways to help Jim, though, it may help him. I think everyone would prefer that this situation be resolved by Jim no longer having violent outbursts- even Jim himself, these outbursts can be terrifying for the person.


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#6 of 14 Old 01-27-2014, 03:32 AM - Thread Starter
 
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I don't want to speculate too much about Jim, I have spoken to his mum but I don't see her often (she's not usually the one collecting him from school). I don't know what led them to his diagnosis, or anything about any strategies they have tried and I think it would feel a bit odd to phone up out of the blue to chat about it.
Defiantly things I keep in mind for DS, though so far we have not noticed any difference when we have eliminated various foods (though since it was on the basis of trying to pin down any reactions in DD we may not have been strict enough with DS)

 

I can see how some of the strategies we use with DS, both at home and school, which help him deal with stress are likely to seem out of place to the rest of his classmates. DS has had a tendency to lash out when he's overwhelmed but we are reaching he stage where he is much better at taking himself off to calm down before that point. However 5 minutes playing in the quiet corner is not something I imagine all the children in the class are allowed to do in the middle of a maths lesson. It probably does seem like he is "getting away" with stuff that other children wouldn't to his classmates and I do wonder if this is part of what DDs classmates see.

 

That said I also think DS does get away with things he knows he is not supposed to be doing because teachers are afraid of how he might react. This is something I plan to bring up at parents evening and his IEP review over the next couple of weeks.

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#7 of 14 Old 01-27-2014, 05:09 AM
 
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Why are you letting Jim continue to victimize your daughter instead of reporting him (and the school) to the appropriate authorities?

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#8 of 14 Old 01-27-2014, 07:29 AM
 
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Why are you letting Jim continue to victimize your daughter instead of reporting him (and the school) to the appropriate authorities?


Do you know who the appropriate authorities are? It sounded like the OP wasn't sure what else she could do, she's trying to get the teachers to put a stop to this but they aren't willing to. It would be great if you could suggest something. I don't know if going to the principle or superintendent or school board would work or be appropriate. A lawsuit might work, but I don't think anyone wants that and the family may not be able to afford it.


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#9 of 14 Old 01-27-2014, 08:22 AM
 
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I haven't read the whole thread but when I saw that you asked what can be done in this situation, I wanted to offer up what my child's school has done in the past.  They call it an "enforced seperation".  A child is kept apart from another child in the same class by the teacher.  They don't sit together, stand in line together, work together etc.  If seen getting close, they are moved.  The children and their families are also brought into this, where they agree it is better to "be apart".  They are careful not to be blaming.  But, it is important to acknowledge one child feeling unsafe and another child being too aggressive toward that child, not in a blaming way, but that the grown up's will ensure the "pattern of behavior" will no longer be tolerated.

 

In today's day and age, in our schools in my state, they are "very careful" to ensure that children who have IEP's do not become victimized or become the aggressor.  If your school does not address this, I would go directly to the principal and have myself for different matters when a classroom teacher isn't responsive.

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#10 of 14 Old 01-28-2014, 03:06 AM - Thread Starter
 
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 Why are you letting Jim continue to victimize your daughter instead of reporting him (and the school) to the appropriate authorities?

 

At this moment in time I feel the appropriate authorities are the school staff, and I have reported it to them. While their actions are not quite all I might like I feel it's best, at this stage to keep working with them. If things do not improve then we will move on to other options.

 

While it's not an experience I would have planned, I think it has the potential for DD to learn a lot from it. Moving her to another class may solve the initial problem, but I think it will actually add to DDs anxieties. Both her fear of autism and that I think she'll worry about her friends being left with a child we felt she was not safe with. Even if she were in a different class she's still likely to see him at break times, lunch etc.

 

It seems that DD is already able to tell, to some extent when JIm is becoming overwhelmed, now we need to help her know what to do with that information and that is where I feel a little limited.

I can tell her to move away, to find an adult or whatever but it needs that person to act in a way which supports both children and that is what we need to develop.

 

That's where I feel a little limited, I have found the school very willing to try anything I have suggested for DS, but I have found that the process does seem to need to be led by me. I have been the one coming up with most of the ideas and advocating for him. For us it's worked well, I am in a position to be able to take that approach and find strategies that work for DS, however had I not been able to do that, what support would DS have had? I suspect very little,

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Do you know who the appropriate authorities are? It sounded like the OP wasn't sure what else she could do, she's trying to get the teachers to put a stop to this but they aren't willing to. It would be great if you could suggest something. I don't know if going to the principle or superintendent or school board would work or be appropriate. A lawsuit might work, but I don't think anyone wants that and the family may not be able to afford it.

How about the police? The OP needs to protect her daughter. If she can't or won't move her daughter away from the abuser, she needs to act to have the abuse removed. Or deal with the life long effects her daughter is likely to suffer both from being abused by the stranger and knowing her mother allowed it to continue.
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#12 of 14 Old 02-15-2014, 10:17 PM
 
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At this moment in time I feel the appropriate authorities are the school staff, and I have reported it to them. While their actions are not quite all I might like I feel it's best, at this stage to keep working with them. If things do not improve then we will move on to other options.

 

 

Have you told the principal?

 

I feel you need to escalate. The situation is extremely serious. His being autistic is absolutely not a reason or excuse for him strangling your child. You owe it to ALL the kids to to move this up the ladder.

 

Gen Ed teachers receive very little training on special needs, and the teacher is out of her depth.

 

I would provide and list with as many dates and details as possible, including conversations with the teacher, and I would hand deliver it. The principal needs to know.

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#13 of 14 Old 03-15-2014, 07:31 AM
 
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My son has ADHD, and sometimes lashes out at school, but physical violence is never tolerated.  He does have the ability to remove himself from the situation if he is getting overwhelmed, but he is always removed from class if he "puts his hands on another student."  We have used enforced separation before, and it is great for us.  In our case, it was a child purposely annoying DS until he reacted, with the intent of getting him in trouble, but I know other kids have had separations before.  If speaking with the teacher did not work, then the next step is talking to the principal or assistant principal.  While the punishments of another student can not be discussed with you, you can ask that your daughter be moved.  

 

Allowing this child to bully your daughter not only hurts her, the child with Autism is being taught that there are no repercussions for his actions.  I would not go to the police, but if your daughter comes home with bruises again, I would take her to her pediatrician to have them documented, and then ask for a face to face with the principal.  After the principal, you could go to the school district if necessary.

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#14 of 14 Old 03-24-2014, 02:55 AM - Thread Starter
 
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Just a bit of an update.

 

We have had a few chats with DS about his diagnosis, of course it was never going to be one "sit down get it all done" talk so it's an ongoing thing. As yet we have not mentioned specifics to DD.

 

We've got a few books for children on dealing with anxiety which we are looking through with both children, as it's something they both suffer from.

 

So far there have been no more issues with DD and Jim. The teacher is doing a much better job of not pairing them up directly or allowing them to work in a group outside the classroom. When they do work in a group together it's with an adult around.

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