What NOT to say (or think)

I am going to make the assumption that you are reading these posts because you know someone that has a child with hidden disabilities. You may have never even seen the behaviours your friend has described because all you’ve ever seen is a charming, pleasant, polite girl or boy that you can’t image throwing anything other than a lovely party. You are trying to picture what you’ve been told about this young person but if you were honest you don’t quite believe the parent who has told you about them. Yet you want to believe them and perhaps help in some way.

THANK YOU! Thank you for at least being willing to gain understanding. As you read the stories written here don’t give in to the temptation that these are sensationalized. They are the real life adventures of living with severe behaviours. It isn’t pretty and it isn’t fun. It is exhausting and isolating and really, really hard.

Here are some tips from those of us who’ve been there.

  1. Turn off the judgements.

We are trying to do our very best to parent our kids, all of them. Sometimes we don’t get things right but please don’t judge our parenting skills by the behaviours of that particular child. Much of that behaviour is beyond our control, in some cases it is beyond their control. While there are times when our child’s behaviour is a reflection of poor parenting get the whole story before you decide.

  1. Do not try to be the ‘doctor’.

Unless you have been asked for an opinion because you are a professional or you have a vast amount of experience, please keep your diagnosis to yourself. Our kids have been poked, prodded, examined, researched, questioned and tested beyond what you can imagine. They are well acquainted with ‘professional’ offices. We ourselves have done plenty of research. If it is happening with our kid…we probably already know about it.

**I realize that sometimes parents are NOT aware of the problems their child has and are living in denial. Tread carefully. Yes, they might need to be made aware, and you may be absolutely right. Keep in mind that you are dealing with a very fragile person…pray ALOT before you move in.

  1. Believe me.

If you really want to know what’s going on with our family and how things are and I trust you enough to tell you, believe me. That shocked look on your face and the jaw swinging back and forth isn’t helping. We have video footage of damage that’s occurred. We have to convince everyone that what we say is true. It is hard work to get the help that our kids need because a lot of the time no one else sees it. Unless your child’s behaviour issues spill over to school, they tend to reserve the worst of it for at home where it is ‘safe’ to unravel.

  1. Invite us over.

Yes my kid might take something of yours, but we’ll replace it or return it. No, they aren’t likely to have a full on rage thing at your house, they reserve that for home. Close the doors to the rooms you don’t want entered. Don’t leave anything valuable lying around. Please, invite us in once in awhile. It is very isolating to have a child with ‘issues’ but you can make us feel less so by having us over. You may be nervous but I can assure you we are even more so! If you can meet us at the door with open arms rather than a list of rules of conduct, that will make us cry with appreciation.

  1. Laugh with us.

We need laughter and fun because life inside our walls often isn’t. We need to release the tension that we constantly live in. If my kid took something of yours and I’m coming over to return it, could we joke about it a little? Could we get together and watch a funny movie?

  1. Offer respite.

Although it is impossible for you to fully understand the extent of the issues we face, learn about them by reading stuff like this. Gain some understanding, ask questions and listen to the answers; and then offer respite. Take the kids for the weekend or better yet, just come over and let the weary parents leave for awhile. It is not easy to find competent care-givers for a child with behavioural issues. It is not okay to leave them with just anyone, nor is it okay to leave them alone, even when they are teen-agers, they need supervision and this, too, is exhausting.

  1. Love my kid.

Accepting that my child has limitations and loving them anyway is your greatest gift to me. If I believe you actually care about my child enough to spend time with them, not so you can fix them, but because you like them, it heals more than you can possibly understand.

  1. Know that I love my kid.

My child is my child whether they were adopted, biological or have gained a place in my heart through foster care or some other arrangement. I chose to be their parent and I will do everything in my power to love them, protect them and fight for them. So please don’t ever make an assumption that because they are difficult to deal with that I love that child less, that I’ve given up or that I will not come to their defence whenever necessary.

  1. Please don’t ask what you don’t really want to know

Do you really want to know how I am? Do you have time to hear how I really am? If I decide to let down my self-protective barrier and let you in, please leave your judgements, criticisms and shock behind. I know that what I tell you IS shocking, but if I see revulsion on your face I can assume you are making judgements about me and my children. Don’t ask if you’re not prepared for the answer.

**If you are new here you might want to know that this post is part of a series on hidden disabilities. I am going to be continuing this series for all of October as part of the 31 Days Challenge. You can see all of the amazing topics over at The Nester’s! To go back to the beginning of this series click on the Alphabet Soup tab and you can see the indexed list of chapters.

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About Lani

With six kids, a farm, a ministry and dreams poking out in every direction I need plenty of grace to keep all the balls in the air. The sweet thing is that when I drop them, that crazy grace of God is there telling me I'm still okay...and you are, too...welcome to this place of grace.

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