Everyone else seems to have all of the answers

[souperhero]

I've always known that ds (6 years) was different and had challenges, but he has always also been so much more interesting and full of personality. Lately though, his challenges have really been overshadowing his strengths. We have finally started to seek out help and a formal diagnosis to enable him to get the services he needs. We were seeing a behavioral therapist that thought it was pretty obvious that he has aspergers. I've always known that, but finally decided to seek out a formal diagnosis so he can get the services that will help him.

We have started to share with friends and family that he is being evaluated for aspergers. I'm often times finding that I wished I didn't.  It seems that everyone has their idea of why, what we should do, what we shouldn't do.

Ds has been gluten & dairy free since he was 4.  This diet really helps him. The positive changes in his behavior after starting this diet is the main reason we decided to hold off on formal testing sooner. My dad told me the other day he believes that being gluten free is why ds acts out. Ds had a meltdown while out of town near the holidays at my sisters house because he wanted a cupcake. Really it was because of sensory overload. Traveling, family party, video games (they have a wii, we have no video games)... My dad witnessed this melt down and now believes he melts down because he can't have what everyone else can have. He brings up gluten just about every time I talk to him.

I opened up to one of my close friends about his behaviors, therapy and diagnosis. She called me today to "tell me a story that she thought I would like". Her nephew spent the night at her house this weekend. Apparently this child has ADHD or something else going on. Not quite sure. When her sister dropped him off she asked her to make sure he takes his medication in the morning, make sure he does not have any red40 & if he started to get worked up, have him do some push ups. She was laughing about it and just thought I would think that was so funny. As if those requests were way out there. I hope I never need to give her some "crazy" requests like that.

My mom seems to think that I would be much happier if I put my kids in school and daycare and returned to work full time. As if that would solve everything.

We are currently homeschooling and trying to figure out what we are going to do for next school year. Of course everyone just seems to think that school is this magical place where ds will have no issues. You know, because they are all because he's home schooled. Of course my homeschooling friends like to remind me that homeschooling him is best because no one will ever love him the way I do.

I have some people telling me I should medicate and other friends telling me to make sure I never do such a horrible thing. Its been recommended and I am open to the idea, but I'm just not quite there yet. I would like to see if we can manage without it.

Then of course there is the group that does not believe there would be any issues if we just disciplined more. You know, spank the aspergers out of him.

The funniest one was if we only allowed Jesus into our hearts (we're not religious), went to church and followed the bible as a life manual then everything would be fine.

Ds had his biggest melt down ever the other day while dh was at work and unable to talk. After the melt down, I was really upset and really needed support. I was going through my list of contacts in my phone and realized there wasn't one single person I felt I could talk to without judgement. Dh and I are feeling really isolated. We're still new to therapy and and figuring out what is best for ds and our family. Its so difficult to also deal with everyone else's input, but really could use someone to talk to at times.

I suppose I am mostly venting, but also wondering how you went about building up a real life support system? How do you deal with everyone else having all the answers, as if it were so simple? I know it would be helpful to find other families dealing with similar struggles, but where do I go about finding them? Has anyone joined support groups? There is one local aspergers support group that I know of. Unfortunately it is run by our last therapist who I did not like and would prefer to stay clear of his advice.

[souperhero]

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Edited by souperhero - 2/12/12 at 5:48pm

[Piglet68]

First of all, hugs!

Support: luckily there are a few parents of spectrum kids in our homeschooling group and we sorta reached out to each other. It is immensely helpful being able to share all the struggles without being judged (not that other families do this, but when talking about how your son used to try to scratch kids' eyes out b/c they were staring at him even the kindest parent can feel a bit of horror at the thought!). So I would look around in your homeschool community and reach out. One mum just invited me to her house for coffee one day. It was wonderful and I was so grateful she did that. 

As a homeschooler I'm finding that there isn't a lot of support to be found in the mainstream autism community mostly b/c they are so immersed in school-related issues. They have concerns that have no meaning to my life (like homework, IEP's, etc). And they really don't get my life, either. So I've stayed away from such places. MDC is a good place, since there are a lot of people here who, even if they don't do all the things we do (unschool, etc) they at least "get" it. 

With respect to all the unwanted advice, yeah I get that it becomes a bit much. But then we grew a thick skin early on in our life as parents because it started when we chose to cosleep, cloth diaper, exclusively breastfeed, extended breastfeed, etc etc...With family members you just need to sit them down and say something like "look, this is overwhelming as it is and I'm getting tons of un-asked for advice, lots of confusing and conflicting advice, so for now I'd rather just not hear any of it; I will ask you if I need specific advice on something but this is our path and we must find our own way". 

I've learned that so much of this is not about THEM or what to do about their unwanted advice and comments. It's more about ME, setting personal boundaries and being assertive. Work on yourself, at least then you feel you have some control over things! ;-)

I have no lost friends b/c of the diagnosis but I lost them before we had the diagnosis b/c we didn't know what we were dealing with with DS and his behaviours often frightened other kids/parents or just made people uncomfortable. The nice thing is that your true friends shine through in situations like this. 

[souperhero]

Thank you. I was thinking after I posted about how I remember feeling the same way when I first became a mom. Natural birth, homebirth, nursing a toddler, co sleeping, not vaxing, etc... I dealt with it then and now I feel like I'm dealing with it all over again. This time around though, it feels more raw. This is my child they are talking about, not just my parenting. This is so much tougher. I feel like not only am I being judged, but so is ds. 

I recently moved about an hour away so I have not been getting together with my old friends as much. I've been hesitant to join homeschool groups out here because I'm pretty sure that we are going to give school a try next school year. I really should try though.

Thanks again for posting.

[nayma]

i just wanted to pop in and say that, in many ways i could have written this post.  i'm really sorry it's hard to find support- the kind that lifts you up, not blames or dismisses.  i have also been to our local asperger's support group (without much luck), and have tried to meet other parents of kids on the spectrum in our city.  the tricky thing is that even though we obviously have some things in common, our parenting styles/choices are often so very different.  so, yes, both our girls may have asperger's, but this/that mom may think it's totally bizarre that we're gluten free, don't do red dye, breastfed for a looong time, selectively vax, etc....  i went to a bday party today- a girl from my dd's class.  all the moms there had kids on the spectrum, but i left feeling surprisingly lonely.  my old friends (pre-parenthood) *GOT* me (and vice versa), and i'm sometimes blown away by how my social life has been affected by parenting my dd...  i think feeling heard and understood is fundamental and essential, and these last five years have been so challenging in that respect.

one thing is did do is reach out to people whose voices i liked - people whose blogs i really enjoyed.  some of them are friends on facebook or we've emailed a few times, but one has (we joke) become like a sponsor to me!! ( i'm not trying to make light of having a sponsor in AA, etc.)  it's wild, though, because even though she and i have never met, we have shared countless stories and laughs about our kids over the last year.  our kids have the same diagnosis, but they're also very similar in temperament.  speaking to parents whose kids are quiet, introverted, passive, etc. isn't always helpful for me- but finding someone who instantly GETS it when i explain that my daughter doesn't stop, or is so intense, or bit a kid at school, or exploded- that's helpful!!

i try to remind myself that people (family,friends) generally aren't comfortable with chronic pain/difficulty/confusion.  people want to solve and fix things that aren't easy or comfortable, and even the people who can roll for a longer period of time, seem to wear out eventually and start offering up "answers."  i do believe that they usually come from a good place, but in the moment, their advice feels so bad - like a slap in the face. 

i really hope you do find some good support.  it certainly sounds like you have really good instincts, and i hope you can turn down the volume of the other less-knowledgeable voices.  feel free to pm me, if you ever just need to vent :).

[Linda on the move]

I'm sorry that you are going through this. Sadly, a lot of us can relate.  My DD's issues were blamed on everything from gentle discipline to that fact that my DH's job has moved us to homeschooling to me just doing too much for her. 

Originally Posted by souperhero 

I suppose I am mostly venting, but also wondering how you went about building up a real life support system? How do you deal with everyone else having all the answers, as if it were so simple? I know it would be helpful to find other families dealing with similar struggles, but where do I go about finding them?

It took me a long time to build up a real support network. Eventually, I did end up with several friends who also have kids with special needs. Some of them I've met in odd places, like Weight Watchers. I've met some wonderful moms through activities for my kids, and if you can find group activities appropriate for your little one, you may find other moms who can relate. Social skills class, for example, was the perfect fit for my child and for meeting moms with similar kids.

I would recommend trying the support group just to see what it is like.

Homeschool group *might* help (I've heard it does for some families) but it didn't for me. I ended up meeting more of a support network when my DD started at an alternative school. I'm not getting into the school/homeschool debate -- just saying that meeting moms dealing with similar issues happened more *for me* with my child in an alternative school than a homeschool group.

I've also ended up with some wonderful, supportive women friends whose children are grown. Some of those friendships have been easier for me than friendships with my peers because the comparisons go away.

[FarmerBeth]

I actually find that I get support from my one close friend (like you, if DH and I looked at our phone, we don't have a large system of friends, either) who does not have kids.  It helps to be in touch with my before children life, and we have similar values but since she doesn't have children, there isn't the judging and comparing.

I've also met some really great parents of other special needs kids, and that helps, too, because they know where he's coming from.  Now that DS is older and developing talents equaling his disabilities, some of the parents if kids in activities he's involved in have been pretty nice to meet, too, because they've seen him at his best and not just his worst.  But this was far away when my son was your son's age.  Just saying this because the type of network you'll need and develop will change as your child gets older.  At this point, my son's world has really broadened and I need to broaden mine.

The advice thing was a very real strain on DH's and my relationships with our families and friends.  If I did it over again, I would have been more clear of my boundaries from the start.  We had about four years of no family involvement from my parents and strained family involvement from DH's.  It's been a long haul repairing the damage, but worth it.  My father, in particular, has benefited from coming to terms with my DS's diagnoses and with how he feels about his own abilities and difficulties, and my son finally has a relationship with his grandfather.  I wish I'd been clear at the beginning so as not to blow a fuse and keep the dialogue open.

[Qestia]

Nothing to add except hugs. I guess we're pretty socially isolated--even our families are 1000 miles away-- which is one problem but at least spares me from listening to unwanted advice. I will tell you we eat gluten, have TV and video games, send DS to school, and he still has plenty of issues. The first two lines of your post spoke to me so much, I could have written them myself. Sorry, mama.

[Emmeline II]

Originally Posted by souperhero 

Ds has been gluten & dairy free since he was 4.  This diet really helps him. The positive changes in his behavior after starting this diet is the main reason we decided to hold off on formal testing sooner. My dad told me the other day he believes that being gluten free is why ds acts out. Ds had a meltdown while out of town near the holidays at my sisters house because he wanted a cupcake. Really it was because of sensory overload. Traveling, family party, video games (they have a wii, we have no video games)... My dad witnessed this melt down and now believes he melts down because he can't have what everyone else can have. He brings up gluten just about every time I talk to him.

Since it's your dad you could try writing down how you came to choose this diet for your ds and specify the positive difference it has made in his behavior. Then I would point out that a 6yo having a meltdown at an out-of-town holiday gathering is not surprising for any child. And last, you could say that you appreciate that he is trying to help, but that you have put more time into understanding and helping your ds more than he can possibly imagine, and that you and the doctors (that usually helps ) will figure out how to best help your ds. If all else fails, "ds' diet is not open for discussion."

I opened up to one of my close friends about his behaviors, therapy and diagnosis. She called me today to "tell me a story that she thought I would like". Her nephew spent the night at her house this weekend. Apparently this child has ADHD or something else going on. Not quite sure. When her sister dropped him off she asked her to make sure he takes his medication in the morning, make sure he does not have any red40 & if he started to get worked up, have him do some push ups. She was laughing about it and just thought I would think that was so funny. As if those requests were way out there. I hope I never need to give her some "crazy" requests like that.

Maybe you should make friends with her sister . If that comes up again I'd say that I don't see what she finds funny, and that I'm sure her sister went through a lot of stress and heartache trying to figure out how to best help her son.

My mom seems to think that I would be much happier if I put my kids in school and daycare and returned to work full time. As if that would solve everything.

I think this is another "'cause it's your mom'" take the time to spell it out for her. I'd probably say that this would be exchanging one stress for another then piling on more, as you would have to deal with the school to get an appropriate education for your ds, plus whatever private doctors and therapies he needs.

We are currently homeschooling and trying to figure out what we are going to do for next school year. Of course everyone just seems to think that school is this magical place where ds will have no issues. You know, because they are all because he's home schooled. Of course my homeschooling friends like to remind me that homeschooling him is best because no one will ever love him the way I do.

Sometimes our preferred schooling option isn't the right choice for a particular child, but school definitely isn't a cure-all; how do they really think he would do if just plopped into their child's class? Though once you have a diagnosis you could say "the doctor said that homeschooling doesn't cause X."

I have some people telling me I should medicate and other friends telling me to make sure I never do such a horrible thing. Its been recommended and I am open to the idea, but I'm just not quite there yet. I would like to see if we can manage without it.

"We will continually review our options and do what WE think is best for ds."

Then of course there is the group that does not believe there would be any issues if we just disciplined more. You know, spank the aspergers out of him.

You could say to them "did you know that children with behavior issues/special needs are more likely to be abused, because when corporal punishment doesn't work the parent escalates trying to get results?"

Some people are trying to help and some are trying to "fix" what you "broke." My sister got a lot of that advice with her second son; eventually her replies were down to "read that," "considered that," "thanks for trying to help, but we have all the medical help we need."

Having other children as an example can sometimes help quiet critics. Ds was noticeably "different" by the time he was 2yo--dd was the opposite. She was more outwardly "sweet," "affectionate," "disciplined'" etc. By the time she 2yo I would say "well, if it's us, how do you explain dd?" And they would .

Edited by Emmeline II - 2/14/12 at 3:20pm

[fiddlefern]

We just got ds1's dx of asperger's 6 days ago.  The biggest response I'm getting from people who don't know us too well is a tirade about how everyone is so labeled and over-diagnosed these days.  Gee, thanks for your vote of confidence in my decision to have him evaluated.    Mostly my spiritual community has been supportive, but one of the moms keeps sending me stuff on putting ds1 on a gluten free diet, although I don't think I've ever indicated an interest.

Even though you and I have different ideas about what our kids need, I TOTALLY relate to feeling frustrated with the fact other people who don't LIVE with my kid are so sure they have the answers for my kid.  I hope you able to begin to piece together your support network.    I will agree with some previous posters that for me, much of the support has come from people who weren't directly my peers, including our family's unofficial "auntie" with no kids, and a friend of mine with a teenager who has disabilities.

[souperhero]

Thank you so much for you responses. My mom was just here visiting for a week. It was really challenging having someone in my house for that long. I felt like our every move was under a microscope. "you should have handled that this way", "you should be doing this", "i would do this", "you should't have done that". I know we're not perfect parents and there is a lot we're working on, but at the moment we are just doing the best we can while being overwhelmed with everything.  

I'm going to really work on trying to build up a support network and make it clear to the less supportive people that certain things are not up for discussion. Much like I had to about a homebirth, extended breastfeeding, homeschooling, etc..

Thanks again. I have a few other concerns about ds. I will start a new thread for those.