1) We are sorry that someone is going through a hardship. It is very difficult. The best thing to say is I'm here for you. Be there to listen. They might want to just talk about other things. They might want someone to take their minds off of the many things they face on a daily basis. I'm sorry that I've had a number of knee surgeries. I really am. I am not sorry for my children.
2) Try to be positive about their life. Find something that is going for them and say it. It could be just what they are wearing at the moment. It could be that they think they handle things well. That they have a lot of strength. Even if they feel weak having someone say they are strong might help. A honest positive reinforcement statement can replace a negative they have in their head.
3) A lot of parents like to talk about future events of their children. What they are going to do in a couple of years. It is important for a special needs parent to just be concerned about today maybe tomorrow. With so many questions yet to be answered there really is no reason to start looking ahead. It would be very encouraging to understand that piling things in a day is just not possible with a special needs child. I get my children outside I scored. It is very difficult to think about taking this or that class. I can however think about tomorrow.
4) Realizing that parenting a special needs child is a new realm. They say that parenting does not come with a manual however they try. Special needs parenting really does not come with one. It is trying, trying, trying, succeeding, losing the skill and trying again. There is no set protocol and every one is different. While consequences work for Sharon they do not work for Leah. In fact, anything that works for Sharon does not work for Leah.
5) Let them come to you for progress updates or how they are doing. I try and know as much about Sharon and Leah as I can. I try and answer questions that I get asked. However, I don't have all the answers. I don't know what their future holds. I feel like I fail on a daily basis. When Sharon was first was diagnosed people asked me questions that I did not have the answer to. I would point them to the internet. Worst thing ever. They will learn and get excited about learning. If they want to come and share they will. I would advice special needs parents that the more somebody knows about your child the more comfortable they are. That is my experience anyway.
Lastly the best learning experience in this life is to know a special needs person. I know this because I have experienced a lot of things. The most I have ever learned is from being the mother of Sharon and Leah. What they have taught me about life can't be replaced. They experience this world in a completely different way. The parents are part of that. The world that was once concrete becomes fluid enough to change you. That is not always a bad thing.
With that being said, I had asked another mother to write down her experience. I hope you enjoy her piece. She is also much better with words.
My name is Emily. I’m a friend of Kandi’s, and I have two
kids on the spectrum: a nine-year-old son and a five-year-old daughter.
My younger sister has four small children, soon to be five.
My oldest nephew is six years old. My oldest nephew. Five kids, six and under,
all neurotypical. I can’t even imagine.
I don’t understand her life, but I try to encourage her to
be the best mom she can. I’m not always good at it.
She doesn’t understand mine, either. Here’s the thing,
though. I can’t imagine anyone more supportive or encouraging to me, even
though we live far apart.
She approaches my kids with kindness when we visit, and
loves them well, just the way they are. She doesn’t offer parenting advice; she
understands that she doesn’t understand. Every time I speak to her, she wants
to know how they’re doing, and she asks me, and she listens.
My sister understands that we are all here to learn from
each other. To support someone in your life with a disability, or raising kids
with disabilities, that’s all you need to do. Listen and learn.
You don’t have to say much. “That sounds hard,” maybe, but
really the best thing you can do is celebrate the child’s progress. “That’s
great,” my sister will say. “I’m so proud of him/her.” She understands it’s not
about my parenting. It’s all about the kids.
You don’t need to do anything but bear that in mind. You’re
not here to wow us, or be our teachers, and there’s no pressure on you to do
that. Don't worry. We’re all here to learn. Every last one of us.
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