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My sister does little about her children's autism

1012 Views 18 Replies 10 Participants Last post by  townmouse
My sister has 2 children - one who is autistic and one who has???? Maybe autism, maybe something else (he confuses the doctors - he is still undergoing "tests"
: )

I am really frustrated with my sister - she does very little to help her kids!!!
She is not open to working with their diet, supplementing with vitamins (because her very conservative doctor said "Vit B can be toxic in high doses), and certainly not chelation....

She did have the oldest (diagnosed at 3) in ABA for about 1.5 years, but then he had to start school (normal public school - he has an aide)

The youngest is receiving ABA right now, but his speech is worsenning. Other symptoms remain the same.

She does not even have the internet set up to research things (I research things and she dismisses them) and she won't contact any Autism support group.

I think she is depressesed and conservative in nature (as is her husband) - but these qualities are not benefitting her kids...

Honestly, I sometimes want to care for her kids myself, but she would not consider it. She does love, and is loving, towards her children. I just feel she is not doing enough to help them, and wouldn't it be a tragedy if they could be helped...but weren't???

I know I sound judgemental. I guess my question is: how do you help/support someone who has special needs children?

As I have never posted in this section, I will introduce myself. I have a DH, 3 children (10,7,and 3) a dog and a cat.
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Um, I am not chelating my son, nor do I have plans to. I am not doing any kind of diet modification. As for "supplements," the only thing we're doing is probiotics and a multivitamin. We're looking into enzymes. I am not going to give my kid vit B12 shots either. And I'm a registered nurse.

He is in ST, OT, and play therapy, and we are going to start TEACCH treatment soon as well. I participate in support groups and the autism society, because I feel I NEED to connect with other autism parents/families.

My point is, just because she's not doing the things you mention doesn't mean she's not doing anything. As for not researching in the internet, that's no crime she reading books or anything?

You could very well be right, she may be depressed, and in a little bit of denial (hence the no contacting the autism society). The way you can help her best is not to judge how she chooses to treat her children. As long as she is doing SOMETHING to help them, as in therapies and working with the school system, that's a start. Not every parent is ready to dive in head first into the whole autism "universe." It's very overwhelming, and let me tell you, as a mom who is in the newly diagnosed phase, it really sucks sometimes. I have so many books on autism and sensory integration I feel I'll never finish them. I have a gazillion websites bookmarked. We have therapy 3x a week. Evaluations. Doctor's appointments. IFSP meetings. It is like being on a merry-go-round from hell some days, to be quite blunt. My whole LIFE is consumed by autism, and it gets exhausting and old and frustrating. I'm tired and I just want to be "normal," but that ain't gonna happen.

What I'm saying is please be gentle. It is so so hard to have an autistic child. She is loving, you said. She isn't neglectful. She is getting treatment of some kind. These are good things. Maybe give her the book, "Making Peace With Autism." It might help her. Or direct her to the autism online support group I participate in, which is wonderful:

Not every parent who has a child with autism does the gf/cf diet and supplements and B12 shots and chelation. And that's FINE. As long as they're getting some sort of (helpful, in not shock therapy like they do in one "treatment" center) treatment, that's a step in the right direction.
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My best friend has a dd with autism. As soon as she was diagnosed, my friend jumped in head first & researched every aspect of it, to get her daughter the best treatment & care possible. She is active in an autism awareness group that raises money to fund the treatment & cure of autism. Her dd takes Celexa to control rage & self injurious behaviors. I know of other people whose kids are on special diets, who say that their kids' symptoms have all but disappeared. I also know of many people who are in deep denial, & NOTHING you say or do will help them until THEY are ready to hear the word autism & help their child...

No one way is the right way, or even the best way. What you can do is support your sister & love her kids- the way they ARE, not the way you think (or society thinks) they should be. Your sister sounds like she is doing the best she can, & I hope she appreciates you for wanting so much to help her.

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It sounds like your sister is already familiar with educational interventions, which is good. Since I discovered so many issues with my DD that I never dreamed we'd be facing, I definitely think it's a good idea to at least screen for treatable conditions...but doing the biomed route is an enormously stressful undertaking because most doctors aren't familiar with the options and those that ARE usually don't take insurance. You practically have to take it upon yourself to do hours upon hours of research and become an expert in order to even know where to look for answers. I understand why it can be overwhelming for parents especially in the face of shuttling kids around to multiple OT/ST/etc. therapy sessions every week, which are also extremely important.

Without pushing it too hard I'd give her a copy of the book "Children with Starving Brains" by Jaquelyn McCandless and tell her that it's an interesting read and you wanted her to at least know about the options out there. Dr. McCandless is an MD and does a great job at describing the major medical interventions, the rationale behind the diet, etc.
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You don't sound judgemental, you sound like a person who loves their family and wants the best for them.

Until a year ago I was very much like your sister. I felt completely helpless even though my best friend had an older son with ASD and suggested many different therapies that we could try, supplements galore (she actually gave me a couple hundred dollars worth along with very detailed written instructions), gave me phone numbers for a DAN doctor and specialists that might help him, provided and paid for a sitter so that I could attend support group and other meetings, offered to go with me to doctors appts, and made lots of good suggestions. She suggested that food sensitivities might be a part of the problem and analyzed his diet for me, came up with creative recipes, did everything but actually prepare food so that we could try an elimination diet.

The supplements sat on a shelf collecting dust for over a year, I only recently looked into the chelation that she suggested, it took me two years to call the DAN doctor, a year to call the 1st neurologist, and 2 months just to call EI. I attended a support group meeting twice and never went back, it was 2 years before I tried the elimination diet - I could go on and on.

Normally I am a very proactive person. Before I quit working I was the director of a charity that provided help to women and children. I never took no for an answer in my job, flatly refused to believe that anything was impossible. There was always a way to improve a situation. When my son received his initial diagnosis, it devastated me and I felt unable to do anything. Had I been approached about a mother & child in this situation in my former job I would have known what to do, where to go for help. What I didn't know, I would have found through my contacts in social services and the community. To say that it was overwhelming would be an understatement. Also, I was very mainstream. My parents raised me to believe that supplements other than commercial vitamins were worthless, vaxing was good, and I initially believed that a DAN doctor was just a quack. Eventually, I was mentally/emotionally ready to help my son, but it took a long time and lots of gentle loving support.

The good news is that she is allowing her kids to particiapte in therapy - there are some parents who refuse even that. Hopefully your sister will come around and will reach a point where she is able to be more active in her children's care. Knowing what it is like to have one special needs child, I cannot imagine what it must be like to have a 2nd - especially one who is undiagnosed.

The best thing that you can do is to support her emotionally. She may have had a diagnosis or an idea that something was wrong for years, but each time you hear/see it from someone else (doctor, school, relative, therapist, a kid at the zoo, the person at the grocery store purposely avoiding looking at your child) it is still a shock. It is like you are watching your hopes and dreams for this precious child die on a daily basis, and the reminders that he/she is different are endless.
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Thanks so much for the responses

I will create a new mantra "I will be gentle with my sister, I will be gentle with my sister..."

I understand my sister might not be into biomedical approaches (she is quite mainstream)...but I wish she would read up on it more, read up on autism in general more. To be honest and fair to my sister, she is pushed by many people to be more pro-active ( our mother, her inlaws) - and I think she is just shutting us out. She really does not hear anything anyone says anymore.
I know there is some denial at play (in her case I think it is denial that there is hope, are anything to learn about autism - because she doesn't want "quackery" or "to get her hopes up".

I do love her children, the way they are now.

I think I need a support group of my own - "families and autism"!

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My Ds is 9, and although I have tried various sorts of therapies over the last 6 or 7 years (since we identified his delays), I have reached a point these days where I feel he benefits more from less intervention. No therapies, no diet modifications, very little pressure to be anyone other than who he is. While I understand and respect families who try many possible approaches, we have found a comfortable response for us. Some people could see it as denial, some as nearly neglect. But for us, less focus on what he cannot do; and more support in his strengths promotes an attitude of peaceful acceptance that makes life pleasant. Rather than trying to mold him into society, I am focusing on helping him find a niche where he can fit comfortably.

I do not know that your sister has come full circle like this. Sometimes just getting through the day (or year) is a sufficient goal. Perhaps in the future she will try to take more proactive steps. Maybe I will, too, especially if he asks for help. But I have a hard time listening to everyone's (especially my family's) advice about how to fix my Ds, who in my eyes is darn near perfect exactly as he is. An intensive search for therapies would conflict with the unconditional love I feel for my boy; send the message to him that he is somehow broken and needs to be repaired.

You say your sister is loving. Maybe what looks like denial is a process of acceptance and adaptation, and will be tempered over time with honest looks at alternatives. Please be patient with her, and assume she is doing what she feels is right for her children.
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Originally Posted by kathymuggle
I do love her children, the way they are now.

Just the fact that you are posting about this, worried about them, proves you love them! I hope my post didn't sound like I felt otherwise!
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You do sound very judgmental, and I would be very hurt if my sister thought that way about me and my parenting of my special needs kids.

I recently was politely told off by an acquaintance because of my judgmental attitudes, and it has made re-examine why I feel the way I do and acted in such an unsupportive manner. Knowing her choices were radically different made me feel like mine were not adequate, and it made me defensive and critical. Not an excuse, but it did help me realize that my choices are just fine and so is anyone's else's as long as they're doing their best for their kids. And hubris is a little part of it, too. It's easy to be smug when you're on the other side of the fence.

Instead of criticsizing your sister's handling of this, how about starting over before making a judgement? Ask her questions about her children's special needs; what does it mean to her to have a child with special needs, how has it affected her life and her families, what are her hopes and dreams for them? Ask her about the basics; what is the diagnosis and delays she's dealing with, what kind of therapy and help has she been offered and what does she think of their effectiveness, what has her experience been with the school system? And then ask her the most important question you can, what can I do to help you? What do you need? You probably will learn so much by just having a simple conversation with her and seeing things from her viewpoint.

It's truly overwhelming to have 2 SN kids, and I think more people should be supportive instead of critical, especially family. You say the oldest in school, he probably has an IEP and unless the school district is wonderful and rare, she has had to do a lot of work with the schools with meetings and making sure everything is on track. Some people don't feel comfortable going to support groups, and information online is subjective at best.
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Also, another thing to realize is that there are a lot of politics within the autism community on what the cause is, what treatments should be used, etc. Everyone has their own opinion, and conversely are being attacked for it. It's not a positive thing, and I am finding myself more and more turned off by organizations that are dogmatic and absolute in their opinions. It doesn't help anyone.

Your sister has her own belief system which is different than yours. That's not a bad thing. She has come to her own decisions based on her beliefs, and telling her that they are wrong is going to be counterproductive. It goes back to the old adage, Do unto others as you would have them do unto you. Would you like to be told your method of parenting was wrong? Would you like to be told to do medical interventions on your children that you did not trust? Of course not.
yeah . . what she said . .

Don't forget either that your sister in the middle of grieving the loss of normal children. This isn't what she dreamed of through her pregnancy and what she thought her parenting experiance would be. My dd has fairly mild SID (nothing compared to Autism) and I had to grieve the loss of "normal child" completely before I could accept the diagnosis and consider help. and in the end we opted for no therapy, no elimination diets, nothing, actually, was our well thought out educated descision as to what we wanted to do. And I certainly didn't feel like I owed an explination to anyone.

just give her time and stop being so pushy. She will look into it when she is ready. You can make sure she knows that if she wants you to look up anything, run get anything, take the kids for the afternoon that you are there for her and also let her know that you will support her descision to do what she thinks is best for her boys whatever that descision is.
Ok....I get that

-my sister has the right to raise her kids anyway she sees fit (as long as it is not abusive)
- she may never embrace alternative therapy of any kind due to her belief systems; if she does it will be on her own timetable.
-there are politics involved in the tratment of autism
-and me pushing her probably isn't doing her any good.

I am still frustrated though, by her lack of pro-activity. It does not have to be the therapy I would explore in her shoes - but something. It is odd that I know more/have done more research on autism than she has - I am not their mother! I have heard/read repeatedly that early intervention is key to a good prognosis - and her children have had little intervention. I DO care for her children and am saddenned by the possibility that they won't reach their full potential due to her inaction.
If wanting the best for children is judgemental - so be it, I am judgemental. BTW - most people in my family think she is to inactive. I am not alone in these feelings, I genuinely believe she has some issues around this....

In the end, there is nothing I can do about it, I am not their mother. And I do want to be supportive. I think I partly came here to vent - I KNOW I have to stop pushing my sister, and I cannot say any of this to her - it would be too hurtful, and really - she has enough to deal with. I do not know if I should have vented here - but I did not know where else to vent.

Empress said I should ask her " What can I do to help you?" - this is great advice, Empress, thank-you. While i am two hours away, I visit her city about every 2 months, and we talk a lot (so I haven't ostrasized her with my pushiness, which is a good thing

Thanks again for everyone's responses

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Originally Posted by kathymuggle
It is odd that I know more/have done more research on autism than she has - I am not their mother!
it isn't odd at all. 1. parenting kids with autism may leave little time for anything else. 2. Its not your kids. Its not your life that has just thrown up on you. itis not your kids suffering.

She is stuck dealing with the every day reality of autism and what it means to her, her children and her family.

different people handle this sort of news differently. Some crawl into a hole until they can slowly emerge and face the world. Some go crazy researching. She wants to restand process. you sem to be a researcher. it doesn't mean she isn't diong something. She may be waiting for Gods direction or timing. who knows what she is doing. but it is not at all odd to me that she is not our running around searching for a cure. She has two children with autism to care for, appointments, testing, evaluating, and inthe middle of it all she is still trying to process what the diagnosis (or lack there of) means to them in the very center of who they are.
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Yeah,when you have kids on the spectrum, you don't have much time free for anything else. Getting through the day without any blood being shed is sometimes a great accomplishment...

I do also agree with lilyka- your sister has to grieve- & she has to do it in HER time... she has to look at her kids & realize that the plans she had for them re: school, sports, marriage, may not happen when she expected them to, if they happen at all. She has not lost a child, but she DID lose the child she was expecting & she has to grieve that loss...

Your heart is definitely in the right place, & your sister is lucky to have you. I guarantee, when she is ready to make a move, she will be so glad you are there for her. Her kids are lucky to have an aunt who loves them.
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My suggestion is that you start going to the autism support group meetings (you will be welcomed). After your first meeting or two, invite your sister along. If she is indeed depressed or overwhelmed, having other parents in the exact same situation will help her cope and get emotionally stronger so that she can be there for her children. Can you imagine the guilt and stress she must feel because she has 2 children on the spectrum - she probably feels it is her fault because of her or SO's bad genes.

It is so important for her to have a support group, but not be forced into it, kwim? Make sure you do not tell the others in the group about her depression or issues, she has to tell them that on her own. You may even consider just having coffee with one or two people just to see how they are (make sure their personalities are not too strong for your sister's delicate emotional state), then invite your sister to the next coffee meet up and tell you you have a couple of friends you want her to meet. Heck, meet in the kids section at the bookstore so she can't use her kids as an excuse for not going. Offer to watch her kids for her as soon as she starts to meet w/ other parents.

As soon as she does become comfortable with the group, she will learn about ASD, treatments and what other parents are doing. She will be more interested in it because she has others to support her in her decision making.

Sorry for rambling, but I just feel the support is important regardless of where you get it (internet or in person). I have 2 children on the autism spectrum and I would have never made it through the hard times w/o the other parents who also have ASD kids.

On a side note, I am doing the biomedical treatments with my kids and have seen tremendous progress. My dd starts chelation (topical) in June so I am very optimistic. Here is a site where you can find a rescue angel in your area (parents who are doing biomedical treatments)

Jenni, mom to Helon 3 yrs with autism and Phillip 2 yrs with red flags for autism
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If your sister is experiencing depression, a support group may actually worsen things right now. Seeing & hearing about daily life with children/teens/adults who may be much more severe or experiencing problems that your sister's kids may never have can send her further into depression. One pp suggested that you might try attending by yourself at first which is a wonderful idea. You would definitely be welcomed and could hear firsthand the many different ways that families choose to deal with autism. It might also help you with any feelings that you may be dealing with since you care so much about them.

It sounds like you and your sister currently have a relationship, and just keeping that as normal as possible may be one of the most supportive things that you can do.

Originally Posted by Noodlesmom4
If your sister is experiencing depression, a support group may actually worsen things right now. Seeing & hearing about daily life with children/teens/adults who may be much more severe or experiencing problems that your sister's kids may never have can send her further into depression.
This is very true. I had a panic attack at my first autism society meeting. I wanted to vomit and run out of the scared me so much and made me feel like I was alice falling down the rabbit hole to be in that room with all those parents and hear all their experiences. It's terrifying at first, and it can really scare you. I had read TONS about autism and was well-educated about it before that meeting, too, and I still had that visceral reaction. It's weird.
I agree w/ the 2 previous posts, but I did want to add something. Finding someone to meet with your sister and yourself over coffee is less stressful. Heck, even set up a playdate so it is less like a support group. Were I live, we have various support systems set up - Bunco, meetings, coffee outings, dinners or a night out for drinks. Much of it is set up for us to take a break from our kids and talk about anything. We have become good friends. Some of the ladies who have spectrum kids work in Early Intervention and uses these methods as a less intimifating way to introduce families (who may still be in denial) of newly diagnosed ASD kids to the network of parents, which is so extremely important because it helps so much in many different ways. (1) Learn about what is available in terms of treatments (2) learn what works and what doesn't (3) learn about the schools and how to work around it (4) Develop friendships with people who really truely understand (5) Have a network of people available who are willing to take turns w/ you to watch kids while you and DH go out for a night - nothing comforts you more to know that there is someone watching your child who truely understands and can meet the needs of your child (6) And all the others I can't think of at the moment.

Like the previous posters said, you have to be very careful on how you approach this and it has to be something your sister wants. It is a difficult situation to be in.
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Originally Posted by kathymuggle
While i am two hours away, I visit her city about every 2 months, and we talk a lot
Is it possible that she is doing more for/with her dc than she's telling you?

Maybe you and the other family members have been so pushy and nosy (sorry) that she doesn't feel safe spilling her guts to you and just dismisses you and answers vaguely.

I stopped talking much about my special needs dc to people who gave too much advice but never were involved in truly helping y'know?

In my case I'm an info junkie, and I process thru becoming an expert on all our diagnoses (in kind of a manic way)...but I don't think everybody does that.

She's heard from the dr and the people doing the testing, she has a library, and she's in the daily trenches.

Maybe instead of a how-to manual and checklist from you, when you only visit once every other month, is ticking her off.

Maybe she'd like you to talk less about her problems, and come over and give some real help like watching the kids so she can shop or nap, or cleaning the bathroom or something.

uh, I think I'm projecting now so I'll stop.

Kathy, if the shoe don't fit, don't wear it...I think it is great that you care so much about your sis and her family!
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