As part of my presentation to the Marin Mops group in April, my friend and I came up with some things we want our Typical Mom friends to know. There are a lot of these kinds of lists on the Internet. This is ours.
1. We are just Moms – we’re not super-women.
If you had been given a Special Needs child, you would have risen to the task too. That said, we sometimes need you to acknowledge that our lives are HARD. We deal with behaviours and challenges that you can hardly imagine, and chances are that we only show you that stuff if you’re our closest friend. Because even though we are not Super-Moms, we ARE strong.
2. Just because OUR lives are hard, doesn’t mean that we don’t realize that yours are hard too.
We want to be there for our friends as well. I have friends who are single parents, or are dealing with chronic illnesses of their own, or have ugly family drama, or have severe financial difficulties. Most of the time, I feel blessed, not cursed, by my life.
3. Every parent worries about their child.
For you, those worries may include: will he/she ever find the right mate, be a good parent, get a good job, skin their knee or break their arm on the playground? Those things also worry us.But we also worry about whether our children will ever be independent enough to move out of the house, or will we be their primary caregiver for the rest of our lives? How will they be cared for after we’re gone? Will they have friends in school or will they be too different and sit on the sidelines? Will they be able to stand up for themselves if they are bullied. Will anyone else stand up for them if they are bullied?
With a daughter, I worry about whether she will understand what sex is and be able to fend off potential abusers. Will she ever want kids, and how will we deal with that issue? How will she handle normal female things like puberty, crushes, self-esteem issues. Will she have a best girlfriend to accompany her on this journey?
For parents of kids with medical problems, worries will include things like: will they make it to adulthood? Will they make it to their 10th birthday? Even though it’s a routine procedure, I worry about whether Jenna will make it through her open-heart surgery this summer. These are some pretty major things to worry about. These are the things that, if we are praying people, we are offering up to God on a daily basis.
4. A lot of our worries would be less scary if we lived in a world where everyone was accepted and included.
You can help with that by coaching your kids and teaching them to be kind to everyone.I get a lot of questions about Jenna from kids at the playground, and I LOVE to talk to those kids and help them understand that not everyone learns and grows like they do. I would rather they asked questions than just ignored us or stared at Jenna without interacting. I introduce Jenna and myself to kids and let them know that she would love to play with them, because she doesn’t know how to do that for herself yet. But not all parents of special needs kids are that outgoing or comfortable, and sometimes they need others to take the initiative.
As parents, you can help with this process by being open and friendly yourself. Talk to Special Needs kids and their parents at the park or in your gymnastics class like you would with any other family. If you act uncomfortable and awkward, they will pick up on that and know something is wrong. Your kids will see your example and imitate it, so make it a loving example.You can also talk to your kids about differences at home, and answer their questions with age-appropriate responses. I’ll often tell kids that Jenna just doesn’t grow as fast as other kids, and that’s why she’s so much smaller. When they ask why she talks funny, I tell them that her mouth is still learning how to make some sounds, and it’s going to take a while for her to be able to talk like they do, but that she loves to talk and sing anyway.
5. When getting to know a parent with a Special Needs child, here are some important guidelines to follow:
Never imply that the condition was caused by the parent. The topic of vaccines, for example, is a touchy one even though the medical community has discounted the claims that vaccines and autism are related. Yes, some conditions are caused by excessive substance abuse during pregnancy, or horrible accidents, or what have you, but most of the time, that’s not the case, and unless the information is offered, it’s also none of your business.
DO express genuine interest in the story of our lives. We want to be known. Sometimes parts of our stories might be too personal or painful to talk about until we know you better, but your friendship means the world to us.
Don’t give unsolicited parenting or therapy advice. Unless you are an expert in the field and have recently discovered some new data, the chances that you have any suggestions that haven’t already been considered are very slim.
DO ask about what kinds of therapies our children are in, and seek to understand what that involves. Ask us what our challenges are with our special kids and let us vent. That said, not everyone wants to talk about their situation, so respect that as well.
Don’t pity us or patronize us. We don’t want to be anyone’s charity case.
DO be empathetic, friendly, open-minded, supportive, and loving. We need all the love and support we can get. Invite us to your birthday parties and BBQs, and try to be sensitive to our needs and understanding about our kids’ behaviour. We’re already second-guessing most of our own actions, and worried about what others will think. We want people to understand our kids so that when there is a behavioural issue or our frustration leaks out in public, we don’t feel judged.
Don’t try to make us feel better with platitudes. God doesn’t “give special kids to special Moms”. Special Needs kids are born to all sorts of parents and some of them seriously can’t handle it. If we’re handling it, it means we’re good parents, not “chosen”. If the diagnosis is fresh news for us, we’re probably still grieving the potential loss of all our hopes and dreams and just need to know that we’re not alone and that we WILL be able to handle it.
DO tell us that we’re doing a great job, that you can see how hard it is and that we obviously love our children very much. If our child’s diagnosis is new for us, be super gentle. Tell us that you can’t imagine what we must be going through but want to be there for us.
The biggest thing we want to leave you with today is that a lot of people are dealing with Special Needs. Not all of those needs look the same, and it’s up to all of us to treat each other with respect, love and kindness regardless of who we are and where we are at in our lives. Teach your children to be kind to everyone. Special Needs kids have a lot to offer in friendships – teach your kids to look beyond differences to find things they have in common. And finally, some people living with Special Needs are really broken about it. Please don’t shut them out or alienate them or be afraid of them. Love them.