Okay, moms of kids with special needs, do you sense a disconnect between what you need from your friends and what your friends think you need? Then you are going to love guest blogger Gillian Marchenko‘s post today. You may think she’s been spying on your house after you read her list, so read on.
10 Special Needs of Special Needs Moms
by Gillian Marchenko
As a mother to two little girls who have Down syndrome, I need moms of typically developing kids to know something.
I have needs. And yes, they may be a bit special because I have children with special needs.
The best support a mother receives is from other moms. So moms, how do you act around your friend who has a child with special needs, or around the woman at school you see at pick-up, or the lady standing behind you in line at the grocery store?
10 Special Needs of Special Needs Moms:
- We need you to bring it up. Ask us our stories. It’s OK to ask questions. Most parents of children with disabilities would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly “Hello!” is an easy icebreaker.
- We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, “How can we make this work?”
- We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don’t always need your advice. Feel free to talk to us about a new therapy or diet you’ve heard about. Just be aware that we’ve probably already heard of it/tried it.
- We need you to make an effort. Effort goes a long way. Educate yourself about my child’s disability. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
- We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
- We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn’t mean I won’t ever want to talk about it. Follow my lead. I’ll let you know.
- We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I’d love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
- We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
- We need validation. Don’t dismiss my concerns by saying “oh, my typical child does that”, or my favorite “well, then my kid must have a disability too, because he/she does XYZ also”. When I open up about a struggle, I want validation, not to be blown off.
- We need invitations. Don’t assume I’m too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don’t have kids with special needs, but I’ll go if I can, and if I can’t, your invitation will make my day.
Okay moms, what do you think? Anything new here? Do you agree/disagree? And special needs moms, what did I forget?
What Do You Think?
Gillian and I want to know what you think, so leave a comment. And if you liked Gillian’s post, cruise on over to her website, www.gillianmarchenko.com to read more about her life as the parent of kids with special needs.
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Hi Lynette,
Thanks for your suggestions. Your frustration about feeling left out of conversations is understandable. Hmmm…how do we educate people so they better understand our kids’ needs? That’s a good question. I’ll pass your feedback on to Gillian.
Jolene
Hi Lynette,
Thanks for your suggestions. Your frustration about feeling left out of conversations is understandable. Hmmm…how do we educate people so they better understand our kids’ needs? That’s a good question. I’ll pass your feedback on to Gillian.
Jolene
You make some great points. Now I would love to see people I work with and meet read this and actually follow through on your suggestions, expecially those related to communication. As a parent of two children with multiple disabilities, I sometimes feel that I am left out of conversations because people don’t know how to start a conversation with me about my children. When someone does engage me in a conversation about my children, the conversation is frequently very short because it is difficult for others to understand all the medical and disability related topics that go along with my children. Please continue to share your 10 thing to consider list so that another parent in my situation might have a positive experience to brighten their day.
You make some great points. Now I would love to see people I work with and meet read this and actually follow through on your suggestions, expecially those related to communication. As a parent of two children with multiple disabilities, I sometimes feel that I am left out of conversations because people don’t know how to start a conversation with me about my children. When someone does engage me in a conversation about my children, the conversation is frequently very short because it is difficult for others to understand all the medical and disability related topics that go along with my children. Please continue to share your 10 thing to consider list so that another parent in my situation might have a positive experience to brighten their day.
Dear Shelley,
Thanks for supporting the special needs moms in your world and for recognizing their unrelenting responsibilities. I couldn’t have put it better!
Jolene
Dear Shelley,
Thanks for supporting the special needs moms in your world and for recognizing their unrelenting responsibilities. I couldn’t have put it better!
Jolene
I have worked with special need people for several years and I love every single one of them. I feel like a foster mom at times and an adopted mom at other times. No matter how long I do this, I will nevcr totally understand what a 24/7 mom and dad go through with a child and/or adult. I get to go home after my job, these parents do not! Pray for any parent you may know!!
I have worked with special need people for several years and I love every single one of them. I feel like a foster mom at times and an adopted mom at other times. No matter how long I do this, I will nevcr totally understand what a 24/7 mom and dad go through with a child and/or adult. I get to go home after my job, these parents do not! Pray for any parent you may know!!