She's 11 and he's never gotten specialized help for her. He's just now getting therapy for her, but not specialized to help her with her "theory of mind" deficits (practice perceiving what people are thinking and feeling) and social skills and help for her debilitating anxiety. And her motor tics and gross and fine motor skills deficits.
I've tried pushing it since this is impacting me and my son now as we try hanging out together which is a new thing. His daughter has a phobia of crying. My son cried and she avoided us for the next 36 hours of our visit and couldn't wait for us to leave. My son and I were walking on eggshells after that.
We have another visit planned and I'm stressed out. We tried doing some homegrown CBT with my beau's daughter about it but I'm sure it's going to be a big issue. My son has said that he doesn't like my beau's daughter because of how it was last time we visited.
My boyfriend said that they (he and his ex) didn't want to have their daughter "labeled" even though a neurologist offered to give a diagnosis when she was like 4 or 5 years old. Are there some good sites or examples of Aspie's being glad they had the diagnosis to work with or being angry they did or didn't get the diagnosis?
HELP!?! and thanks in advance.
Is there a way to X-post this in "blending families"?
Emma, I'm sure you mean well but it's not your battle to fight. Unfortunately, your boyfriend and his ex wife made some really poor choices for their daughter and now they are paying the price. You are, please forgive me but there is no better way to put it, ONLY a girlfriend. You have no say. Trying to do CBT with her may be crossing boundaries (since you said it won't go over well). Maybe, for the time being, spend time with him without his daughter... and even without your son for that matter. You don't say how long you have been together or if you are even serious (as in talking marriage) but unless it is serious/long term, you really should leave the kids out of it as much as possible.
Just my two cents.
we've been together almost two years and are just introducing kids. Being very careful. Homegrown CBT was meant as a prep with her for our next visit. Exploring her anxiety levels and doing some role playing. I know i'm just the Girlfriend for heaven's sake! We are trying to move forward.
I don't have illusions about how hard bringing families together can be. I am really doing my work here.
Your advice about not bringing kids together may be right. We are about to schedule joint vacations with the kids and I'm NERVOUS. maybe we shouldn't. At least I'll wait and see how this next visit goes. My gut tells me that this isn't getting better on its own.
I would not try a joint vacation with kids at this point. Vacations often have elements of stress in them, and it sounds like it could really backfire.
If you decide to stay together and move forward with the kids interacting, perhaps you can do it in baby steps? Short perhaps even structured visits? There are some neat books at the library on siblings with autism, friends with autism, etc. They may help your son see what autism and aspergers can look like (read them yourself first to see if you like the messages in them).
I would indeed cross post in blended families.
Just cut and paste the initial post into a thread on that forum. Edit this thread to say you are cross posting, and say you are cross posting in the thread on blended families.
My parents had me evaluated in school but never sought a dx even though it was recommended. Another time, I got an MRI but my parents refused to go to the follow up.
That girl needs a diagnosis and her parents a JERKS for not seeing that she gets one. They are handicapping her by refusing to have her diagnosed. Having a diagnosis and knowing WHY I am the way I am would have been extremely helpful to me as a kid.
I have never held my son's diagnosis from him and I think parents who refuse to tell or dx their kids from any condition they have are jerks. I think more than that, but it's best I not continue.
Next time you & your son are around the girl and your son might cry (I mean, like, you know he's about to be sad), try to get him in another room. Not to hide him, but to hopefully bridge a gap between the girl and yourselves. Work with her on her terms for now so she will get used to you and get used to your son. Crying just happens and if she wants to hide when anyone is crying, that's perfectly ok, too. But you guys need to talk about it and make sure she knows she can come out again when the crying is stopped. (Not that you're forcing her to hide.) And yes, both of you should go in separate rooms.
Edit: I feel like that's all over the place. Sorry. I feel scattered today. lol
Please see my Community Profile! about Asperger's Syndrome!
Emma - if you are serious about starting a life with this man you need to set some boundaries, for your own sake and your child's. He needs to get with his ex and they need to come up with a strong plan to help their child. Who wants to be with a man who deals with life's challenges by ignoring them? Stop to step up buttercup (him not you). Secondly, counseling for all of you as a family unit so that you can make sure this is right for all of you. Your first priority (as you have shown by your post) is your son. His first priority should be his daughter. This is not going to be an easy relationship even if you do move forward but it could be immensely rewarding if everyone is willing to do their part.
Great ideas! Thanks for your input. Lots more questions:
I finally told BF last night that I've been angry (on her behalf) that they haven't gotten his daughter specialized care. He took it okay (but still gets really worked up when we talk about it -he feels criticized). What is up with him feeling like he's going to mess up his daughter by putting her in therapy or giving her a label?
BF's ex vehemently fights diagnosis/therapy and BF is still not into getting a diagnosis. In the past BF has gone along with what his ex wanted with respect to their daughter. At least BF's daughter is seeing a LMFT for problems with her mom and she's just now getting speech therapy. I'm advocating for CBT for the anxiety as the next priority since it is really impacting BF's life -as well as his daughter's- right now. I suggested that he push to take his daughter to the developmental psych center at the large research university he lives near and he thinks that is a bad idea. What gives? He wants a recommendation for someone in a private practice. It seems like he's avoiding the whole thing by needing to do it perfectly. And I'm afraid his daughter won't get targeted treatment by experts if he does that. Thoughts?
What would likely happen if he got a Guardian Ad Litem involved?
Would OT be a good place to start addressing her gross motor tics? What about social skills? Should we push for social skills group therapy or will OT help with this too? (She has no friends at school and the kids treat her really poorly.)
He wants a recommendation for someone in a private practice. It seems like he's avoiding the whole thing by needing to do it perfectly. And I'm afraid his daughter won't get targeted treatment by experts if he does that. Thoughts?
What would likely happen if he got a Guardian Ad Litem involved?
My DD's eval was done by someone in private practice. We felt we could get the most detailed information that way. The evaluator had a very, very high level of expertise and was the best in the area we lived in.
Getting a Gaurdian ad litem involved would be going to war with the mother.
Personally, I feel it is deeply, deeply wrong to go to war with a child's mother because you disagree with her parenting choices, even if her child has special needs.
How much damage could be done to the relationships that are already strained by going through legal channels?
I really cannot even image how I would react if my husband was now with another women who felt she should get legal things in place so she could make choices about what is best for my child. So much is judgement calls, calls you feel better able to make even though you have never lived 24/7 with this child.
but everything has pros and cons
what would happen with a GAL's involvement? I have no experience here. BF has been wanting to challenge custody because of problems between daughter and her mother but things seem to have improved with the very recent therapy with the LFMT.
No i understand that this is potentially very disruptive and am not taking anything lightly! This girl needs help and I want to explore options. BF is asking for help -he feels he has been bullied into accepting status quo by his ex. I feel like I actively try to see his situation with his ex objectively and actively challenge his negative assumptions about her; play devil's advocate on her behalf.
Hi there, you sure are taking on alot. Unfortunately the child has had 11 yrs of her family burying their head in the sand. Sure no-one wants their child labelled but she would have been entitled to specialised help and would be far more advanced than she is now. You have your own son to care for. It is lovely you want to include her in more stuff but I don't think she is there yet so you may need to step back for a while and allow her to benefit from therapy now. Specialists will work with her to develop her theory of mind but this can only be done in stages! Appeciate your lovely son even more!
Baby steps! Just sat with BF as he came up with a plan that included getting specialized help without mention of getting a diagnosis. He's excited and energized to work on this. I guess we'll find out how that works. Do specialists normally prefer working from a diagnosis? I didn't bring up the diagnosis issue this time.
Thanks for the book recommend. That should really help me and my son. BF and I are reading "Stepmonster" about blending families. Has been a really helpful read but there's so much work to do. Especially on my part to try to help BF not feel excluded when me and DS are hanging out with BF when he doesn't have his daughter. We cancelled our plans to get all of us together until we can come at this with more therapy and other work behind us.
I think it depends. You need a diagnosis to access certain programs and often for accommodations at school.
A specialist can certainly work with a child though, or make suggestions, without a diagnosis.
There's a lot more to a diagnosis that just a label. All that other information is extremely helpful to specialist.
Some of the things we've done for our DD required her dx, and some didn't (such as her social skills class). Some didn't *require* a dx (such as attending her alternative school) but the information about her from her dx was helpful to the teachers.
but everything has pros and cons
I know how you feel Emma. I am struggling with my boyfriend of a year as well. I don't have any children but I just moved in with him and his son. I knew his son had issues but didn't realize how severe it was and how much my boyfriend ingores the issues and doesn't get his son the help he needs. Thank you for your post. It was very helpful.
I really recommend the book "Stepmonster" for dealing with emotions that come up. There are great ideas about what kinds of support to ask for from your BF. Thanks for posting! Would like to hear more.
I kept supporting, supporting, and listening and we've arrived! Boyfriend is taking his ex to court so that he can get therapy and genetic testing for his daughter.
We were able to have her seen by a neuropsychologist and she diagnosed boyfriend's daughter with non-verbal learning disorder which is really helpful except that his ex hasn't been willing to tell the teachers at school so that daughter can get learning support.
So it looks like she has 22Q11.2 deletion syndrome but we'll find out soon. She is socially motivated so it is not autism spectrum.
That was a lot of hard work. He's asking for legal custody so that he can make medical decisions without these kinds of delays.
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