We’re working on a ‘manifesto’ so visitors and participants on the site will know the kind of community we’re trying to build here. Consider this a first draft. We’ll add more I’m sure!
Here are some rules:
- Thou shalt be respectful to every parent here.
- Thou shalt be thyself at all times. We aren’t super-parents; we’re human. Being honest will help you; holding it in won’t.
- Thou shalt laugh at thyself. It’ll make you feel better.
- Thou shalt ask questions. There are stupid questions in this world, but it’s been our experience that parents of kids with these sorts of needs don’t ask them.
- If thou doth wisheth to offer advice, doeth it constructively or shuteth thy hole.
- Thou shalt value thy children regardless of what they are going through. Thou may be having a day where thou’d rather send them off with the gypsies, and that’s fine. Thou can do that (feel like sending them off, not actually doing it, though) and still love them.
- Thou shalt celebrate thy children’s hard-earned achievements, no matter how small. However, if it involves doing the Riverdance, thou might want to closeth thy blinds.
- Thou shalt not be a horse’s ass.
- Thou shalt always be an advocate for thy children.
- Thou shalt never give up.
- Thou shalt go to Italy, regardless of what that poem says. Thou wilt have to change planes in Holland anyway, trust me.
Here’s what we believe:
- There’s nothing ‘wrong’ with our child or yours. He or she may be struggling to overcome some or many things, but our children are perfect just as they are.
- We will do what is necessary to help our child reach his or her full potential, whatever that is.
- We know more about our child than anyone else. We will not blindly accept the judgments of others, no matter how ‘expert’ they may be.
- We will, however, listen to any and all advice given to us. We reserve the right to use it, adapt it to our needs, or ignore it and make fun of it.
- We are perfectly fine with people asking us questions about our son and all the therapies we go to. There is a lot of information to share and learning from each other is how we become better parents. In the rare cases where the questioner is trying to reinforce their belief that all parents with special needs kids are weird or must be doing something wrong, I will instruct my son to go take a whiz on your front door.
- We will work to be OK with not being perfect. We will work to be OK with not being OK with not being perfect. And so on.
- People who ignore our experience and understanding of our child, treat us like idiots, and think they know more than we do about him just because they have a long string of initials after their name can go to hell.
- You have our permission to say “bite me” or be sarcastic to anyone who makes an idiotic comment to you in public. Example: “No, I never thought about talking to my child more. We decided before we had children that we were all going to become mimes.”
- Never use a big word when profanity will do.
- Anyone who judges our children, says anything derogatory about them, or makes fun of them will get their ass kicked and their name taken. Once time travel is invented, we will go back in time and smack their parents, too.
- Parents who can affirm each other with all their flaws and foibles and be supportive and understanding in the midst of all the emotions that come with this are the best people we know. We love you!
To borrow the famous philosophers’ words, “Be excellent to each other. And, party on, dudes!”
{ 3 comments… read them below or add one }
Hi I don’t know why I am writing, I am from mexico and I don’t speack english very well and i am even worst writing.
I live in london since 3 years aho and two years ago; Mauricio was born and Now I am in so much pain that I can even satr to tray to explain. I really don’t know what tp do or what it is expect of me it just exrtmily painful, i never fell something like this before.
I can continueo because all the cryging, i can even look what i am doing , i just want to say thank you for sharing your experience whit us, and thank you for being here
Shouting ‘hear, hear’ from the rafters!
Cheers
Rosario,
Thanks for writing. Please know that most of us have gone through many of the same things you are going through now. There are a lot of people who understand and who will help you. Writing people is a way of reaching out for help, and this is how things can start to get better.
At the beginning, it feels awful. That was the worst time for us. But it slowly gets better. You’ll start learning more. You’ll start connecting with other parents who have been where you are now, and they will help you. You’ll start finding the kinds of services you and your child need.
If there is any advice I can give, it’s to take things one step at a time. This is hard to do when all you can think about is everything you and your child are going to have to face in the future. This is how I felt at first. When I started being able to worry less about the future and give my attention to what’s going on right now, things started getting a little better.
Try to sit down and say to yourself, “what’s the next step I need to take?” Just do that one thing, and don’t worry about anything else yet. Once you do that one thing, ask yourself again, “what’s the next step?” And then keep doing that. Taking it one step at a time is how it gets better and easier.
Let’s try this. If you are more comfortable writing in Spanish, we have a native Spanish speaker in our family (and one more who is trying to be) who I know would translate for me. Just send me an e-mail at tim@bothhandsandaflashlight.com.
Also, I don’t know anything about how services work in London, but we can find some people who do. I already asked Maddy, and there are others I can ask as well. This is how we help each other. We remember how others have helped us, and we want to help others in the same way.
I know this is very, very hard. But you can do it, and you will have the support of other parents to help get you there. All you have to do is keep doing what you did here – ask.