Thursday, 7 November 2013

Unsolicited advice and hidden accusations

I love my family. I enjoyed our time at home last week so much and I already look forward to seeing them around Christmas time again. I also know that my family loves us. They have always accepted Sunny the way he is and for that I am thankful because I know this could be different.

But there is one thing that really annoys me. Almost every time I see my family I get unsolicited advice with regard to Sunny from different members of the family. Or decisions we made as a couple with regard to who is responsible for what in our marriage are being scrutinised and I feel like I constantly have to defend myself. 

While sometimes advice is a good thing because it opens my eyes for things I did not realise before or makes me rethink certain things it is also often problematic and even unfitting in this respective case.

For example, when we went swimming some months ago a member of my family insisted that Sunny carried the life vest he uses for swimming by himself on the way to the pool. Because "he needs to learn to do more things by himself". Yeah, right. Thanks for pointing that out to me because I was totally not aware of that. So what happened? Since he already does not walk steadily and securely on normal ground and the floor of the swimming pool is slippery he slipped and almost fell. This is why I carry his stuff for him: so that he can concentrate on walking.

Another example: when Sunny started to get too big for his travel bed and I desperately tried to find something that would keep him in the big bed where I sleep while I visit my family. At home he has a safety bed that he cannot escape from and I needed something similar for our trips. I was met by confusion on all the fuss I was making about it and that "he just needs to learn to sleep in a regular bed because other kids have to learn that, too". As if it were always that easy.

It is always easy to say "he just has to do this or that", all the while diminishing the struggles we have with the simple statement that nothing is problematic and "other kids need to learn that, too". I totally agree but it is not so easy for Sunny to learn new things or get accustomed to new situations just like that. Comparing him to other NT kids just does not work and it makes me feel bad. Sometimes he just does not understand why he should do things in certain ways or it is hard for him to learn them. It takes him times x longer to learn something new than it takes NT kids to learn the same thing. Sometimes he is afraid of things or situations that not even I understand. But I have to accept that and let him find ways to deal with situations on his own because I can explain to him 100 times that something is not dangerous and he will still be afraid. So he just sometimes has his very unique way of doing things and that is okay for me.

The problem is that my family does not live our everyday life. They see us about 5-6 times a year for 2-4 days each. We visit them in their homes (which is, although we go there regularly, still foreign territory for Sunny). Many of you having a child with special needs child know that an unknown environment can make a huge difference on our children.

There are reasons why we do the things the way we do them. They might not always be obvious if you do not know the history behind it. But I wish my family would accept that. Instead they sometimes make me feel like Sunny would be able to do much more already or would be able to learn things more quickly if I did not prevent him from doing so. I hate those hidden accusations. They make me feel bad and like I am failing at being Sunny's mother - while there is nothing I want more than to support him in the best way I can so that he can learn and grow at his own pace.

So please, stop making me feel guilty and like a failure - I am really doing the best I can. You can give me advice when you walked in my shoes for a month. Until then, let me do the things the way I do them.



14 comments:

  1. Joy you are a wonderful extraordinary mother, I totally get what you are coming from since I have had similar experiences, but you and only you know what Sunny needs and what's best for him. only you because it's you who sees him every day and you know how he handles things and you know when he is ready for more. I'm sure your family doesn't mean anything wrong with their comments but I know that it hurts and it's very frustrating to have to deal with that. Many hugs!!!

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    1. Thanks for your lovely comment and the hugs Natalia, they feel good! :-)

      I know my family means well when they give me advice. I just wish they stopped acting like it was all not that big of a deal. Because a lot of things are just that for us - a big deal.

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    2. I know! I had a few conversations with my mother about it and then now she kind of understands that it's big deal! When I go and visit once a year, I have to take into account so many little things just like you, the sleeping situation, the food, the medical center and so many more. In the beginning I had to explain every little thing and defend myself, now it's not as bad but still frustrates me.
      It takes time I guess , meantime know that you are not alone and that you are doing everything right for your beautiful Sunny!

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    3. Thank you, seriously. I see that you totally get it! xo

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  2. I can imagine that, and even though their advice may be well-meaning, it is not what Sunny needs. You are a great mom, you get this feed-back from the people who know Sunny with all his needs best (except of you and your husband of yourse). I bet it is tiring to tell them over and over again why you can't "just" put Sunny in a normal bed, and later remind them that you've already told them. Much patience to you!!

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    1. Thanks Stephanie! It is tiring and I just stopped to talk about that. If a new advice comes, I just do not comment on it at all and try not to let it get to me. I just try to ignore it.

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  3. I can relate. That is how I feel about unsolicited advice about feeding or that I should work harder at teaching Charlie to talk rather than sign. Some people get what my life is like and others are clueless. From all the lurking I do, I think you are a fantastic mom. Don't let the clueless make you think otherwise.

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    1. Thank you so much Becca, that was a very nice thing to say! I am sorry that you know what it feels like because that means you are faced with this, too. I guess anyone is faced with comments and advice like that... :-/

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  4. Oh my gosh, because this is totally inappropriate but I am completely chuckling on how many of our American-isms you are adopting. Like totally.

    Okay, you HAVE to be smiling now and that was my intent :)

    But here's the thing. It sucks. It just sucks that not only do they not get it they won't ever get it. I was just talking to a friend of mine about this very thing. One of the perks of going public with our families about my blog is that it woke them up. I don't diss them but they read what we are going through. They read the comments and it opens their eyes a little. Okay a lot.

    Which you are not ready for and I get that!!! This is where you go for support and for those of us who do get it. We know how hard this vacation was for you. That Sunny while super awesome is not going to do the things like the golden grandchild. He will do them, but in his way under your supervision to keep him safe.

    You are doing an incredibly hard job and you are doing so much better because you can vent. You can take advice that is warranted. But the other stuff? Well, they just don't get it.

    I'm so sorry this marred your time with your family. And I know it was a wonderful trip as much as their, well being idiots may have hurt you.

    Hugs

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    1. Kerri, I guess reading too many American blogs rubs off on me ;-)

      Seriously, thank you so much for your comment. Once again, you nailed it. Completely.

      As for the going public I will probably never we willing to do that. Apart from that hardly anyone in my family speaks very good English (my parents do not speak English at all), so no one would be able to read and understand my ramblings anyway.

      No, this is my private space and I want it to stay that way. It is liberating to know that I can write about anyone or anything without having to ponder what or how I can write without hurting anyone's feeling.

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  5. i think we've all gone through this with our family, friends, teachers, doctors, all the people who live on the outside looking into our lives. it's hard, i know. and i wish i had some really great advice to share, but i don't. i guess we either have to get really good at biting our tongue or really good at saying thanks, but no thanks for unwanted advice. maybe you can have a tshirt made with the word advice inside the universal sign for no ( you know the big red circle w/ a slash through it?). you could have it in english so it would be less obvious than having it in german. that might be good for a lot of us!

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    1. Haha, love the idea with the shirt! :-)

      Thank you Misty, I know there is not really anything to suggest for this kind of situation. I am getting better at rolling my eyes when nobody is watching, ignoring it and venting secretly.

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  6. SIGH. I have actually avoided trips home for these same reasons. Also, they tell me that "don't worry, Tucker will catch up." I'm like really? AND WHAT IF HE DOES NOT? Is that NOT okay? Because it needs to be okay. He's not going to catch up. Not now, anyway. Of course I hope that happens later but really? He's four. It's not going to happen tomorrow. Sigh. I'm sorry your family is too much like mine :(

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    1. Oh Kristi, sorry that you have the same problem with your family! :-(

      Strangely, nobody has ever said to me that Sunny will catch up. Some people ask me if the doctors think he will catch up and that is a question I am totally okay with. But telling you that Tucker will catch up is just rude because, as you state, it really sound as if it was not okay if he did not catch up.

      Tucker is such a beautiful boy and he is perfect the way he is. Don't let them tear you down! xoxo

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