After writing about the challenges of raising a child on the spectrum, you may be wondering what you could possibly do to help that friend or family member that faces these challenges. My own mother will sometimes look at me and shake her head and say, "I don't know how you do it." I see her two or three times a week. She's familiar with our situation and the unique milestones that it creates in our lives.
So, what can you do? Sometimes simple encouragement is best. "How is your day?" "How are your kids?" "Do you want to go out for an ice cream?" Really, even getting out of the house for thirty minutes can work wonders for a person.
Does the person have other kids? Offer to watch them for an hour or two! It gives the mom or dad a break, a chance to regroup and focus on what's really important.
Educate yourself. Do you care about this person? Do you care about the kids or are you related to them? Read. Read everything you can find on spectrum disorders. It will bring a whole new perspective to how you view the situation that your loved one is in.
And here are some of the don'ts that you can refrain from doing. These are things I've encountered, and although they were well meaning and I'm sure the person or persons had what they thought were my best interests at heart, all these things ended up doing was making myself and my husband very frustrated and left us feeling more than a little disheartened:
Don't try to fix it. When you come into contact with this family, or this loved one, and their child who has this spectrum disorder, you may have all kinds of great advice and suggestions on what they could do differently or who they could talk to. You may feel that what you are seeing is not working and is not they way they should be handling the situation. Unless there is some sort of physical or emotional abuse involved, try to refrain from "helping" in this manner. Trust me. Anyone who has a disabled child has already exhausted all kinds of avenues and tried all kinds of things. They know their child much better than you do. They've seen this kid at their best and their worst, they know all the triggers, they know the tricks for getting in and out of emotional situations with this kid, and having someone else come into the situation who starts offering advice and telling them what they need to be doing will only lead to a lot of anger and frustration. It's one thing to say, hey, I know so and so and they are a counselor, here is their number if you want to call them. But "critiquing" the situation and blithely offering advice shows an insensitivity that is more than infuriating and just short of appalling.
Don't try to change it. Don't tell these people what they should do instead, or question why they are doing things with their child a certain way. There's a reason. They don't have to justify themselves to you.
Don't try to organize them, their lives, or their home. Sometimes dealing with a special needs child is a 24/7 job. It's very draining, emotionally. It can also be draining, financially. Coming over for a visit and questioning why the furniture is arranged a certain way, why the walls have holes in them, or why every single door and window has a lock on it is rude. It doesn't matter if these are your children you're asking this of or some other person. It's rude to go into someone's home and make comments on the interior of it just because it doesn't fit your perception of how it should be. It's also rude to comment on someone else's lifestyle just because they aren't making the decisions you think they should make.
Don't make promises you can't keep. Don't say, we're going to help you, or anything you need, just ask, if you don't mean it! Parents of special needs children learn who they can rely on very quickly. They also know if someone is just blowing smoke.
Don't make assumptions. Don't assume that just because someone has this child, that keeping them out of the loop on family matters is sparing them some stress. Don't avoid extending invitations to them, either, assuming that they will decline, or out of fear that they will bring their child to an event that is not designed for such children. We appreciate simple honesty. If you are having a party, or some other kind of get together, and you want to invite someone, but you're afraid they'll bring their child, who is easily excited or out of control, a simple phrase like this will convey everything you want to convey: "We are having a get together on such and such date. We would love for you to come. We are concerned that Billy (or Joey or Sue or whatever) might be overwhelmed at this function, so we are letting you know well in advance so you can find a sitter." Trust me, we get it! And we will be grateful to you, for sparing us a potentially disastrous evening by letting us know it's not designed for children like ours! We will also be grateful to you for including us, since opportunities for us to get out are few and far between. If you are a family member and something happens, don't intentionally NOT tell us about it, because you think it would add too much to the burden we already carry. We rely heavily on family connections, even if they are far away. Keeping us out of the loop sends a message to us that we aren't really part of the family and that you can't be bothered to let us know what's going on.
And finally, let us talk. Sometimes, having someone to talk to makes a huge difference. Don't assume that our talking to you is a request for you to fix the problem or the situation. Sometimes all we need is a good listener. And ask about our child. A friend of mine had a special needs child and it was very odd...some of the family members would ask about the "normal" kids, but this special needs child seemed to always get left out of the loop, even at birthdays. It was strange, and again, rude.
Now that I have been on my soapbox, I want to say thank you. Thank you, from the bottom of my heart, to my mother, my brother, and my sister in law, who consistently provide love and support to us, and who help us when we need it. Thank you to them for treating my son the way they treat all the other cousins/grandkids. And thank you to the close friends I have who ask me questions because they want to understand, and who provide help whenever they can, even if it's just in the form of a phone call or a quick trip out for ice cream! We are richly blessed with these people in our lives, the wonderful and gifted teachers that my son has, and the incredible people we know who see him as the special little guy that he is.
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