i don't know what to say
November 9, 2010 5:07 PM   Subscribe

A week ago, my sister and her husband (they have a four year old) have decided to undergo a trial separation. Please help me figure out how best to support her, and whether or not I should keep my mouth shut.

My sister and her husband of 8 years are not working out. They have decided to spend some time apart. The core of their troubles, is that when they got married, neither of them wanted kids. A few years into the marriage, my sister felt a sudden imminent urge to have kids. Reluctantly (I think) her husband agreed to one child. He loves his son, but has had no desire to live a family life. At all. Having kids, as with happens to a lot of couples, completely changed everything. For the past four years, they've more or less been living like roommates, with my sister doing all the parenting.

The four year old has been diagnosed as having "very high functioning autism." As a result, they've utilized a number of services in their area. My sister has described being at home as "horrible." They didn't speak for a month before blowing up last week. But she is intent on sticking it out until May or June of 2011, until he's done with preschool. I think this is a really, really bad idea.

This is where I'm not sure if I should offer my opinion. From the time my sister had my nephew diagnosed as having very high functioning autism, I completely doubt the diagnosis. I have another nephew from another sister who absolutely is high functioning autistic - very classic aspirers. His "symptoms" were evident from six months to a year old. He's a pretty independent, chatty, brilliant kid, but lacks a lot of the social development that is typical of kids with asperger's syndrome.

The nephew with my separating sister, is in my opinion, just really badly behaved, due to a fairly uninvolved father, stressed out and depressed sister, who let the 4 year old run the show. I understand that I am not at all a specialist on child behavior or autism, but having spent a lot one on one time with him with both nephews, I just do not see the correlation at all. I have also, at times frustrated with an ill behaved 4 year old, taken it upon myself to tell him "no," set boundaries, and make sure he knows that with me, he is *not* the boss. Kindly and lovingly, but firmly. And he listens.

I feel really confident that his behavior issues are directly related to the unhealthy environment he's being brought in, and despite being 4, can pick up on the tension between his parents, and with my sister pretty much doing the only parenting (and exhausted and stressed out from doing it herself), the 4 year old takes advantage of the situation to act up and misbehave.

In the year that he's received treatment and therapy for his autism, I don't see any changes in him. Which to me, again translates to him not really having high functioning autism, but that the root of his behavioral issues is his home life.

My sister, I'm sure, would be very hurt if I told her this. I've kept my mouth shut completely, because I feel like it's just not my place. But now that they are separating, I feel like it's really really unhealthy to continue living together, bitter, with resentment, stressing out my sister further, hurting their marriage more, and not doing anything to help my nephew - but, as she says, she's afraid to surrender the services and treatment he's been receiving. This is the only reason (as far as I know) that she wants to stay. I don't know if my brother in law plans on moving out - they are financially stressed as it is, with him in med school, and loads of student loans.

I feel like this is a very unhealthy situation for all 3 of them. I feel that it would be important and beneficial for all of them, for my sister to stay with me, or our other sister or brother, who can support her - in areas she's all familiar with, with people who love her, can give her the space and support to be kind to herself, so she's not all alone in all of this. I know she's depressed. I know she's exhausted. I know she just wants to be a great mom. But I strongly feel like it would be in her and my nephew's interest to spend some time apart. If she's a happier mother, if she takes care of herself, it would allow her to parent more thoroughly. Plus she'd have other people around to give my nephew boundaries, and help his behavioral issues. But that would mean surrendering his autism help.

I know this is incredibly long and wordy, but I would really love some advice from people who have known someone in a similar situation. I honestly do not care about being right concerning my nephew's autism. I want my sister to be happy, to look after herself, to not neglect her own peace during all of this. And I think it will ultimately help her to better take care of my nephew if she moves and abandons the services, just by being in a better state of mind, in a healthier physical environment, with support of other people. But again, this is all my opinion. I know she's going through a painful time, and don't know what I should say - if I should just support her in her decision to hang around, or share my personal opinions. I'm not sure what would ultimately be more supportive.
posted by anonymous to Human Relations (17 answers total) 1 user marked this as a favorite
 
"I know she's depressed. I know she's exhausted. I know she just wants to be a great mom. But I strongly feel like it would be in her and my nephew's interest to spend some time apart. If she's a happier mother, if she takes care of herself, it would allow her to parent more thoroughly. Plus she'd have other people around to give my nephew boundaries, and help his behavioral issues. But that would mean surrendering his autism help."

That right there is exactly how you should tell your sister your thoughts. "Sister, I love you so much, and right now I'm really worried about you. I am worried that you're depressed, and I can tell you're exhausted, and I want you to know how proud I am of you for working to be such a great mom to your baby. I think that you should come stay with me and bring my nephew with you so that you can get some true time away from the situation with your husband. I am worried that the stress of all of this is going to be too much and I want you to be able to be happy, to look after your boy, and most importantly of all, be able to look after yourself. You are so important to me. Will you come stay with me for a time?"
posted by patronuscharms at 5:11 PM on November 9, 2010 [2 favorites]


Just for the record, a coworker of mine has a child just diagnosed with high functioning autism and he is a very very difficult child. Part of it is he has sensory issues (connected with his autism.)

While it is true that the home situation is not helping, I don't think it is helpful at this point to diss the diagnosis. And for what it's worth if this child is as difficult as my coworker's child is, that could have stressed the happiest marriage.
posted by St. Alia of the Bunnies at 5:16 PM on November 9, 2010 [3 favorites]


I think you should stay out of it. Don't touch it with a ten foot pole.

If you really, really, really feel like you need to say something then say what you said in your second to last paragraph:
"I feel like this is a very unhealthy situation for all 3 of [you]. I feel that it would be important and beneficial for all of [you], for my [you} to stay with me, or our other sister or brother, who can support [you] - in areas [you're] all familiar with, with people who love [you], can give [you] the space and support to be kind to [yourself], so you're] not all alone in all of this. I know [you're] depressed. I know [you're] exhausted. I know [you] just wants to be a great mom. But I strongly feel like it would be in [your] and my nephew's interest to spend some time apart. If [you're] a happier mother, if [you] take care of [yourself], it would allow [you] to parent more thoroughly. Plus [you]'d have other people around to give my nephew boundaries, and help his behavioral issues."

Frame it as an offer to help emotionally and financially, leave the parenting stuff out of it. Also, if you do research into what kinds of support she can get in your area she may be more likely to take you up on your offer. Ask around for Autism support groups. Maybe if she hears from other moms who deal with Autism daily that her son doesn't sound like an Aspie she'll reevaluate her position.
posted by TooFewShoes at 5:19 PM on November 9, 2010 [1 favorite]


You may know one child with autism but you don't know them all. And there are as many different manifestations of the disorder as there are children with it. So, you're drawing a whole lot of conclusions based on your very tiny sample of two little boys. Leave the diagnosing out of it. Stay out of it. As others have said, offer your sister all the love and support you can. You obviously care a great deal about her and her child. She's lucky to have you, as is your nephew. But I can tell you with absolute certainty that parents of children with autism do not appreciate being told by anyone that their kids would be fine if they only had a little discipline.

Wishing your sister and nephew better days ahead.
posted by Kangaroo at 5:52 PM on November 9, 2010 [20 favorites]


But I can tell you with absolute certainty that parents of children with autism do not appreciate being told by anyone that their kids would be fine if they only had a little discipline.

This, a hundred times. I promise you that virtually every autistic child in the world has a well-meaning relative or two who doubts the diagnosis. You realize that you would be saying that her child's illness, an already very tough thing to handle, can just all be marked down to her faulty mothering? Please don't do this. It happens a lot, but please don't be that person.
posted by LittleMissCranky at 6:07 PM on November 9, 2010 [21 favorites]


Could you look into finding services in your area, or your siblings' areas? Then you could offer her a place to stay as well as services for her son.
posted by christinetheslp at 6:24 PM on November 9, 2010 [1 favorite]


she's afraid to surrender the services and treatment he's been receiving. This is the only reason (as far as I know) that she wants to stay.

If that's true, she can get services provided through the local school district immediately. As soon as a kid with his diagnosis turns 3, he's legally entitled to special education services. She won't have to surrender anything and his treatment will be free.

Have her contact the head administration for her local school district asap and get a copy of his testing reports and diagnosis. They'll meet with her and get the ball rolling.
posted by dzaz at 6:31 PM on November 9, 2010


echoing the message of the thread - please don't tell her or hint to her or suggest that her bad parenting/choosing a partner that doesn't want children is her kid's real problem and that you know because you know another kid with autism.

by all means - offer her a place to stay - tell her that you love her and would do anything to support her during this and that you'd love to have her and her kid around - suggest that circling the wagons in this way after a separation or divorce is healthy and normal. find comparable services near by to reassure her that her family will be taken care of.

offer all that one time, and then support her unconditionally in the decision she makes. it's hard to watch people we love make what we think are huge mistakes, but it's important that we let them live their lives without fear of disappointing us. in 40 years, she'll remember your kindness in this moment or your cruelty (even if you meant it with love). you get to decide which it is.
posted by nadawi at 6:35 PM on November 9, 2010 [1 favorite]


***wanted to add this: at your nephew's age, he will qualify for home services which usually means a person with an ABA background will work with him and also help with parent coaching if they see problems.

So it doesn't matter whether or not he really is on the spectrum; he and your sister will both be getting help.

But I do want to chime in that at this point, please don't second-guess the diagnosis. Even if you're right, it's the last thing she needs right now. And if he's getting help, then the diagnosis doesn't really matter currently.
posted by dzaz at 6:42 PM on November 9, 2010


Take the little girl out once a week. You can't help the parents while they are angry and yelly. The parents will thank you later.
posted by Mr. Yuck at 6:47 PM on November 9, 2010


After my sister's divorce, she asked me to move to my hometown to help with my nieces. The girls were very young (all three were under age 4) and they'd all been through the emotional ringer. I ditched my plan to live in Washington DC and moved home. For the next 3 years, I was a primary caregiver for to the girls and eased the family's transition. With the clarity of 15 years of hindsight I can say moving home to be with my nieces was the best choice for all of us.

The difference is that my sister asked for help. I didn't barrel into her life and take over her kids. I'm not sure she'd have even accepted my help if I'd have offered it. She asked. She controlled the conversation. At most, you can research her options and present that to her. As in, "I know you've got a lot going on. I did some legwork for you so you'd know your options."

The other thing, is are you in it for the long haul? Stabilizing that family could take a year or two. If you're visualizing a few week commitment, then you'd be better off staying out of the mix.
posted by 26.2 at 6:55 PM on November 9, 2010 [2 favorites]


A friend of mine has a child who was school-diagnosed with Asperger Syndrome. Having spent a lot of time with him, my doubts sound a lot like yours.

On the other hand, he absolutely did need help and special attention in school, and a diagnosed condition also convinced his father to be more amenable to providing the sort of structure the child needed at home.

I totally hate that I'm somewhat okay with this. But he's not my kid, I'm not primarily responsible for him, and who am I to split hairs over therapy that the boy needed? If there had been medication involved, I think it would have been a different story.
posted by desuetude at 7:21 PM on November 9, 2010


A lack of progress in treatment does not disprove the diagnosis. This is true in so many things, but particularly (and so deeply frustratingly) with autism spectrum disorders.
posted by lemniskate at 9:29 AM on November 10, 2010 [4 favorites]


From a MeFite who would prefer to remain anonymous.:
Having a child with autism is so very difficult. My son is 4 and I still cry just about every day over the sadness and frustrations that life with him produces. He's another child that people can't believe is autistic - he's so loving, engaged and sweet, with a great sense of humor. Yet he can't speak a word and has no idea how to play with other children. I'm just telling you this because I want you to understand that when they say it's a spectrum, it means that kids are all over the board with what they exhibit. It's like cancer in that it's not one disease - it's a whole bunch of symptoms that all add up to the same diagnosis, yet with a different constellation in each individual.

It's very difficult to get services for your kid. I know all about what the law says that school districts and states have to provide. But actually getting those services can be really tough. If your sister has found a speech therapist or an occupational therapist or someone who is clicking with your nephew, she may be very reluctant to give that up. It takes a long time to build a relationship and establish trust. Even if you don't see any improvement, she might. Progress can be slow. What might be an actual huge gain by this kid might not be even noticed by you.

It's really clear from your post that your heart is in the right place and you have a lot to offer your sister and nephew. You even said that you don't care about "being right" about his diagnosis. I get that you just want very much to help your sister.

Autism is a label nobody wants. There is no advantage to this .. believe me, the state and the school districts give us only what they have to and not a speck more. If you offer your sister the chance to stay with you, you have to accept that her kid needs these services and cannot be without them even for a month or two. It's a really critical time in his development. So just understand that she's really in a terrible bind and cannot just say "sure, we'll come live with you and we'll deal with the autism later".

My son is a perfect angel when my sister looks after him. He saves his worst for me. I'm not saying your nephew has autism - I hope and pray like crazy he doesn't but I am saying, it's a very difficult thing to diagnose and then accept. I still call it the "A" word. I don't like to say it or tell people, even though I've uprooted us and turned our lives inside out to get him the very best treatment I can find. I'm so lucky that I have a sister like you, and a very wonderful brother too. I would be lost without them. So please know that whatever you are able to offer your sister, even if it's just a sympathetic non judgmental ear, it is of great value.

Could you go and stay with them for a little bit? It seems like she could really use not only your companionship and support but maybe she needs some time to meet with a therapist or a lawyer or your nephew's teachers, or whatever, and you could help look after him. Having a trusted person care for your child is so important. She might also like to have a little time to herself to collect her thoughts. Seems like that's something you could do right now, maybe, that might be greatly appreciated.

Good luck to all of you and good for you for being such a great sister.
posted by jessamyn at 9:32 AM on November 10, 2010 [7 favorites]


i don't know a thing about autism. but i do think it's interesting that people are so against questioning a diagnosis. doctors are great, and smart, and do their best. but you know what, doctors are people just like everyone else and they are not perfect. sometimes patients ARE misdiagnosed. i am not saying that the nephew is or isn't autistic, but there's absolutely nothing wrong with getting a second opinion. particularly from someone who is a specialist in that sort of thing, if the first doctor wasn't. of course, i agree with everyone else who says approach with caution, if at all. but it's just good to keep in mind, in general, that a diagnosis is not necessarily black and white, correct, 100% of the time, from every single doctor. if it seems off (and your sister agrees) then a second opinion couldn't hurt, could it?
posted by lblair at 4:25 PM on November 10, 2010


lblair, that's not the point. NOW is not the time to question the diagnosis.
posted by St. Alia of the Bunnies at 7:24 PM on November 10, 2010 [1 favorite]


but i do think it's interesting that people are so against questioning a diagnosis.

It's totally healthy to question a diagnosis, I agree. Appropriate diagnoses to question include a) your own, b) your own child's, c) other close friends or family if invited to opine or in case of emergency (i.e. imminent danger of physical harm.)

But questioning the diagnosis of your nephew based on how he acts during visits with Aunt/Uncle Mefite analyzed through the prism of concerns over your sister and her failing marriage...that's out of turn.

No offense, anonymous. I think your opinions are totally natural thoughts which are similar to thoughts that I would likely have in the same situation. I just don't think sharing this theory is going to benefit your sister at this point.

When you say that she and your nephew should "spend some time apart," I think you mean that that she would have help taking care of the kids if she lived with you or your siblings, not that she should move out leave the boy with his father. For the sake of advice, I'm presuming the former.

I don't see why she would have to abandon his autism therapy if she moved out? If you live too far away from his current therapist, help her find a new one. If SHE feels that it's helping him, and fear of abandoning treatment keeps her from leaving a toxic atmosphere, then why not accommodate her acceptance of the diagnosis?

It will be disruptive enough for your nephew to move in these circumstances, but if you can at least facilitate replicating something close to his current routine, it would help his stress level and your sister's. Besides, if the child does wind up with a new therapist, it'll provide your sister with a second opinion regarding your nephew's diagnosis.
posted by desuetude at 8:11 PM on November 10, 2010


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