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.