I have a friend who has adorable twins. These yummy twins are both special needs kids and have an awesomely devoted Mommy who puts their needs first and goes above and beyond to ensure her kids have the best that they can have in their lives. Every day must be a tremendous struggle, but you never ever hear her complain. She loves these twins more than anything. So when she shared this rant with me, I felt that I needed to put it out there in a public forum. Thankfully she agreed to allow me to post it.
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I’m not ranting about my kids’ behavior. Lately I’ve had a lot of thoughts about that too, but I need to rant about a grown woman’s behavior.
I took the twins out for lunch to meet a friend and his 2 young kids (his wife was shopping with her mom– sorry I missed her!). We went to a very kid friendly place so I knew if either or both of my kids melted down it would be ok. And I even skipped a trip to the playground beforehand in over 90 degree weather KNOWING that wouldn’t work for my kids even though our friend and his kids went. I love that playground but even in great weather I’m ASKING for a meltdown when it’s time to leave.
Lunch went well and the twin who normally melts down lately didn’t melt down at all. The twin who has been basically well behaved lately melted down at the beginning because his pizza was too hot and then melted down at the end because he wanted to leave before we were all ready.
Conversation glossed over Girlie’s hypotonia and Boychikle’s autism — we didn’t talk about all that much, but if you had been eavesdropping on our entire conversation, then yes, it would have been clear to you that I was dealing with two special needs preschoolers both of whom have different special needs. I think at one point I was explaining to my friend’s 6 year old what autism meant because she asked Girlie if Boychikle ever stops crying (she’s 6, give her a break, I have no prob with that). So the 6 year old mentioned something about her hearing being tested a few years ago and I asked her dad about it and then related that Girlie failed a tymp test back in March but passed in one ear just last month so we’re taking a wait and see approach on tubes versus hearing aids (she’s on a steroid nose spray that seems to have cured one ear!). Yes, I speak loudly (I have moderate hearing loss too, and yep, I’m avoiding hearing aids– I haven’t even seen an audiologist since 1996– I’ve got enough going on with my kids right now) and yes, we were about to leave….
So this lady I’ve seen around the community and can’t remember her name was there…. we said hi to each other. She stopped me on the way out to tell me that my daughter DOES need hearing aids. Apparently when I let Girlie wander the restaurant a little (since she was behaving nicely) while I was writing the check or getting the diaper bag together—- she spoke to Girlie. I have NO problem with random people in the community speaking to my kids. But she told me that Girlie didn’t understand a word she was saying and she wasn’t speaking correctly for her age. Right— I know that. So I explained that we’re taking a wait and see approach and that Girlie is in speech therapy…. also that we’re dealing with hypotonia, dyspraxia, autism….. so she said that Girlie needs to be part of the world and she won’t be able to do that without hearing aids. Interesting— that’s not what Girlie’s audiologist said, but ok, I guess a random stranger knows my child’s tymp test results best after speaking to her for 3 seconds.
Ok that would have been fine and I wouldn’t have needed to vent about that. Have a strong opinion about 3 year olds wearing hearing aids- great. But then she said that I should never speak about my children’s disabilities in front of them. I know a lot of people who feel that way and yes, I’ve been told that before— usually by people who don’t know anyone with disabilities and don’t understand autism versus pdd or hypotonia versus cerebral palsy. There’s a good reason that I explain directly to my children and to everyone who knows my children EXACTLY what they have and what it means. Disagree with me if you want, but I feel it’s very important for my children to know exactly why they’re different and to learn what these words mean since they hear them when their therapists and doctors talk to me in front of them. So at their level I explain things. So she disagrees with me— fine. I’ve known her for 2 minutes now and disagreeing with me about the hearing aids is one thing but now she needs to pick another bone in this —starting to get irritating— conversation. I’m not going to suddenly put hearing aids in my daughter and not mention their disabilities in front of them because a random woman at the pizza store is starting in with me.
But then– this is the clincher. She says “you and your husband need a vacation”. I said “you think??” And I thought we’d both laugh and that would be it. But she kept going! She said it’s important for parents of special needs kids to reconnect and that life gets hectic and we need a break, and yada yada yada. This lady doesn’t even know me but she presumes that we have time and money for a vacation and that we’d be willing for someone to babysit our children overnight AND that we could FIND a sitter for these 2 for that long? I didn’t quite have the guts to say “oh I guess you’re paying for the vacation AND offering to babysit” but I did consider it.
I said “thank you for your opinion, have a nice day” and collected my kids and apologized to my friend for having to hear all that crap once we got outside. The thing is……. it’s not the first time I’ve heard any of those opinions— my daughter doesn’t understand anything and needs hearing aids—– I shouldn’t use the words hypotonia, dyspraxia, autism, hearing loss, etc in front of my children—- my husband and I need a vacation (well DUH!)……. but that IS the first time I’ve heard all of those opinions uttered so strongly by the same person in the course of a 3 minute standing conversation at a pizza store— and I still don’t even know this woman’s name.
Special needs moms, back me up. Here are my rules.
—- If you tell me that my husband and I need a vacation then you need to hand us money for the vacation AND a qualified babysitter. Until that point, we’re not taking a vacation, period.
— If you’ve met with 2 different audiologists and discussed my daughter’s tymp results, you’re allowed to give me your opinion on whether she should have hearing aids. If you have a one sentence conversation with my daughter and don’t even know that the tymp has improved recently, then keep your opinion to yourself.
— YOU try raising two special needs preschoolers in a neurotypical world and not ever mention their disabilities in front of them. Have multiple conversations per week with doctors, therapists, teachers, and even your mother in law— but NEVER be in front of them— oh, and you’re 100% in charge of them by yourself most of the time by the way— yep, keep them completely in the dark, and THEN tell me I shouldn’t explain these things to my kids. My kids know they are different, they know why they need therapists and doctors, and they know that their parents are doing everything they can to help them. They are smart, confident, and secure. That doesn’t mean my daughter is telling people she’s wearing foot braces because of her hypotonia, but it does mean that she likes wearing her foot braces and she’s not scared of them, and she even got to pick the little pink swirls that are on them. It doesn’t mean my son is going around telling people he has autism, but it does mean that he understands that most 3 year olds don’t read at a first grade level and that learning to wave bye bye was a very big deal for him. They know that we are incredibly proud of who they are and know them extremely well– their abilities and weaknesses.
Thanks for listening.
In the Pink 