Mom of special-needs kids rant

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.

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10 Comments

  1. tesyaa says:

    I have so been there! Thank you for this! And if you ever want to talk to a mom of a boy with apraxia and ASD just let me know.

  2. Nora says:

    People like this drive me crazy. I nannied for a lovely special needs girl in Chicago during college. Some afternoon at the park another mom told me that I shouldn’t have had my daughter so young and that she shouldn’t really play with “normal kids” (her words not mine) because it’s mean when she can’t really keep up. My response was definitely curt to the point of rude but it made a couple of nearby moms laugh and come to my defence which was nice.

    The mother of my charge had much the same attitude you do and because of it her daughter didn’t fight appointments or accommodations. Just keep asking people where they’re sending you on vacation and make sure you two get dinner and a nap together occasionally. :-)

  3. Otir says:

    Special needs mom backing you up here! You’re right spot on. Through the years (my autistic son will be soon fifteen), not only have I had to care for his special needs, to deal with everything that needs not to be detailed here, but also to learn how to grow a thick skin, and a special attitude that doesn’t welcome uninvited advices, whether they be coming from the best of intentions (because, unfortunately the depicted conversation will occur again and again, not necessarily only from random pizza patrons but also from family members who have never offered babysitting, but have so much read this and that in the paper that breaks out a newstory that has already been discussed for years in expert circles, that we attend and follow carefully anyway!).

    As to the question of mentioning disabilities in front of our children, I have been “scolded” too (like someone meaning well telling me upfront “stop labeling your kid” so that she could label me as abusive, and I just shrud my shoulders, because my boys have grown up with a mother who believed in their different abilities, not in their disabilities, and has been so proud of each and every of their accomplishments, and they love the support and the acknowledgment.

  4. U go girl– sometimes you need to school grownups too- we need more special needs moms like you to get out there and share your experiences. Thank you for your candor and courage!

  5. OlyC says:

    My older sister has special needs. When she was much younger and getting speech and occupational therapy our mom didn’t get a sitter for me I just tagged along. Being that I was a little kid, 4 maybe 5 years old, I was always asking my mom about the other kids I would see in the therapist’s office. You know, like, “Why is that little girl standing on the chairs? I’m not allowed to stand on them.” “Why won’t that boy stop shouting?” One day my mom said “Doll, you need to mind you own business.”

    Flash forward to a similar scene to your friend’s story, family restaurant, older (but probably well meaning) person butting in. According to Mom, I stood in between her and my mother, gave her a once over and said “You should really mind your own business.” Mother was, of course, horrified. My dad? Still cracks him up.

  6. Ariela says:

    Thank you for this honest, moving and touchingly honest post. You are such a terrific mother !

  7. Rachel says:

    I agree wholeheartedly. How very narrow minded of strangers! I have been told that I want my child to be different and by talking about his issues in front of him and with him have guaranteed it – puh-lease!

    Special-needs mom; you sound about as balanced and realistic as a mom can be; special needs children or not. Let these people have their opinions; you seem to be doing everything you can. Keep it up!

  8. This is what happens when people automatically assume that a “label” is a bad thing. I’m a Special Education teacher and I see this kind of stuff all the time. Without a “label”, these kids can’t get the services they need, including special classrooms, teachers, therapies and interventions, which MANY studies have shown are necessary to help special children reach their fullest potential, whatever that potential may be. Also, the kids are going to learn what they are labeled as eventually and studies have shown that when children are introduced to things earlier, they are more comfortable with them later on. If a child sees everyone around them being embarrassed at what they’re being called, they will internalize that embarrassment and think that they have something to be ashamed of. The earlier that a child understands that they are different and that their difference has a name, the more comfortable they will be with themselves later on. Everyone is so terrified of labels in this country, but we have to categorize and classify people one way or the other.

    Also, the “label” is a much quicker and easier way of communicating the situation to people it needs to be communicated to. For example, saying, “my child has Down’s Syndrome” and knowing that the person you said that to understands all the things that go along with that is much easier than saying, “my child has a genetically based disorder that has permanently altered their chromosomes, leading to physical differences, below average cognitive abilities and a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.” Saying two words, the “label” of Down’s Syndrome, is much easier. We’re all labeled one way or another. People need to stop being so caught up with labels and what they mean.

  9. chanie says:

    Agree 100%. And GOOD FOR YOU that you are open with your kids about their problems. (IMO everything is okay except something taboo, and kids are afraid of things that they don’t know about. So are other people – and the key to normalcy is education and being comfortable with your limitations.) I will say again: GOOD FOR YOU.

    Unfortunately for you, stupid people make up about 90% of the world’s population.

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