I Don’t Want Your Advice

I am the mother of a child with special needs, and I don’t want your advice.

There.  I said it.

I don’t want your advice.

I don’t want to hear your opinion about how I parent my child.

I don’t care about some study you read online that says that everything I’m doing is wrong.

I don’t want you to send me articles on Facebook that you skimmed over and think might be “helpful” when “dealing with” my child.

I don’t care about your snide remarks or rolled eyes when I mention that I am getting my child evaluated for another possible diagnosis.

I really, REALLY don’t want to hear about how you think that Sensory Processing Disorder or Autism or ADHD aren’t real.

I. Don’t. Want. Your. Advice.

Why, you ask?  Why wouldn’t the mother of a child with special needs want more advice, more information, more opinions?  Why wouldn’t she do everything in her power to help her child?  Why would she turn away anyone’s well-intentioned suggestions?

I’ll tell you why.

Because I’ve read it all already.  There is nothing out there that I haven’t seen, read, researched, and discussed with our doctors and therapists.  Nothing.  I’m not exaggerating.

No one does research like a parent of a child with special needs.

I have stayed up well past midnight more times than I can count, digging through every article out there, looking for new ways to connect with my child.  From health issues, to education, to social behavior, I’ve read it all.  It’s what I do.

But there is more.

I have knowledge that no one else in the world has.

I know my child.

After reading all of the information that the internet can provide (both valid and complete bullshit), I am as well-versed as a person can be in my child’s diagnoses, but more importantly, after almost 6 years of motherhood, I can safely say that I am an expert when it comes to my child.

I know what will and will not work when it comes to feeding, discipline, safety, and education.

I know that bribery will not work, because there is nothing that my child wants more than doing the thing she doesn’t want to do.

I know that time outs don’t work, but that quiet time in my lap does.

I know that I will probably have to hide veggies in sauces and dips for years to come.

I know that having an escape plan from any public situation is required because my child can only handle so much sensory input before she loses her mind.

I know that my child can not have freedom to walk next to the cart at Target because she will run the second I take my eye off of her.

I know that SPD, ASD, and ADHD are quite real, and anyone who says that they aren’t needs to do some research right after they get their head out of their ass.

I have a team of experts that help me implement the plan we have created to help my child be the very best she can be.  It’s not like I’m just making this stuff up as I go along. Between our pediatrician, specialists, occupational, speech, physical, and behavioral therapists we know that we’re on the right track.  And if something new pops up, I do my research again, and we alter our plan to take care of it.

I love my kids more than anything in the world.

Trust me to know what I’m doing.

 

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The Most Wonderful Time of the Year

I love the holidays.  I really do think it’s the most wonderful time of the year.  And the girls are just making it better.  Every year they understand it a little more, and this year the magic is definitely blooming in their hearts.  But I still have some things to bitch about when it comes to the holidays.  And, being the generous person that I am, I thought I’d share them with you.

1.  Here comes Santa Claus……and there go my kids
There is a common occurrence among young children; they want to see Santa, oh god they want to see Santa, until they actually see Santa. Then, holy crap, Santa is the scariest man in the world.  Ask Laurel.  Last year she could not wait to see Santa.  We were the first in line to sit in his lap at Chev’s company Christmas party.  Then we got up there and this happened:

Ho Ho Holy Shit this is funny

Ho Ho Holy Shit this is funny

Laurel is crying, I’m laughing, Ellie is all “who the hell is this guy?”, and the elf is just hamming it up.  I’m guessing this year will be more of the same, but times two.  However obsessed Ellie is with the man in red, she had finally developed a healthy fear of strangers. So please, mother of a perfectly behaved 7 year old who has obviously forgotten what toddlers are like, cut us some damn slack.  Thanks.

2.  Silver Bells and Sensory Overload

Bright lights, shiny colored presents, loud music, people everywhere, lots of food….its all a bit overwhelming, isn’t it?  Even as adults we can get exhausted from the whirlwind of the holidays.  Triple that for little kids.  Laurel doesn’t deal well with loud sounds or lots of noises at once.  She says they “scare-a mines ears.”  Add in her normal three year old fear of strangers and holidays can be pretty rough on her.  And yes, uncle she only sees three times a year, you count as a stranger.  And no, she will NOT willingly sit on your lap.  Please stop trying to make her do so before she has a complete meltdown.  Now multiply that by one hundred for Ellie.  While she likes people, she doesn’t particularly like being pinched, hugged, or patted thirty thousand times in one day.  Add in all of the sights, sounds, and smells that can go along with a large gathering and there is a very good chance that I will be carrying her around all day because she has suddenly become a Velcro baby.  I’m her safe space, her home base.  If you see her clinging to me like a baby opossum, its because she is done.  Just done.  So leave her alone.

3. Cakes and Cookies and…..all the other stuff we can’t eat.

IMG_3162e

Sorry, kid, not for you.

In addition to Down syndrome, Ellie has Celiac disease.  We found out this summer, so this is our first gluten free holiday season.  And I’m already dreading it.  Nothing like telling your kid that she can’t eat ANY of the cookies at the party.  Or the crackers.  Or the cake.  Or the sandwiches.  Or the turkey, because it was roasted with cornbread stuffing inside of it and now the whole thing is contaminated, which doesn’t really matter, because I wouldn’t trust it anyway without reading the nutrition info label, because frozen turkeys are often injected with stuff that has gluten in it, so it might have been contaminated from the day it was killed.  Oh, and I’ll be needing a brand new stick of butter and clean knife to use to butter her gluten free bread that I brought from home, because there are gluteny crumbs in the butter and now the entire stick is contaminated and she can’t eat that or she’ll get explosive diarrhea for the next three days and I do NOT want to deal with that, so instead I’ll deal with your rolled eyes and snarky comments behind my back.  And NO she can NOT have just one cookie.  I know its a holiday and you think I’m just being mean, but unless you want to stay up all night with her while she cries because her little tummy hurts so much that she wants to die, just stfu and put the cookie down.  And for the love of god, do NOT give Laurel a cookie in front of Ellie.  Unless you want to unleash the Hulk and have Ellie lose her mind and smash everything she can get her cute little hands on.

4.  Great Expectations

My girls are three.  They like shiny things.  Especially if they are at eye level.  They like to pick them up and shake them and put them in their mouths and play with them and drop them.  They also like stairways to unknown lands and doorways to uncharted territory.  It is a child’s job to explore the world around them.  This is why you will find nothing breakable placed less than four feet from the floor in my house.  This is why we use plastic plates.  This is why we have a gate blocking off our kitchen and locks on our attic and basement doors.  Because children are meant to explore.  If we are invited to your house for the holidays, do not expect them to suppress their nature just because you didn’t want to child-proof your house.  It’s not going to happen.  Don’t expect them to listen to you if you tell them not to touch your grandmother’s antique snow globe which you place oh-so-conveniently on the coffee table.  Don’t expect them to listen to you if you tell them to stay out of the spare room which you left wide open.  It isn’t going to happen.  They aren’t being bad.  They are doing what they are suppose to do.  You are an adult.  Your job is to be smart enough to figure this out.

5.  Holiday Q&A

If your family is like mine, the holidays are the time you see relatives you don’t see the rest of the year, so it’s natural to want to catch up with them.  Its natural for them to ask questions about the your kids, and what they are doing these days.  I get that.  Please, ask me about Laurel’s love of painting and Ellie’s passion for music.  I will wax poetic about it for hours.  But there are some questions and comments that can really piss me off.  Like “Why isn’t Ellie talking yet?  That doesn’t seem normal.  I’ve never heard of downsy kids not being able to talk.”  Oh, really?  In your vast research of children with Down syndrome, you missed all of the information about low muscle tone and poor vocal planning that a large number of kids have to deal with?  Maybe you should do more research before implying that my kid isn’t normal right in front of her.  She may not be able to talk, but she understands everything you say.  And don’t use the term “downsy.”  People with Down syndrome hate that shit.  So do their parents.  Would you call a person who uses a wheelchair “wheelsy.”  I certainly hope not.  Ellie is a person first, thankyouverymuch.  Then there are the barely-veiled questions and comments that imply that you disapprove of my parenting style.  No, I’m not going to let them eat candy before dinner.  No, they are not potty trained yet.  Yes, I really am going to let Laurel run around with the boys instead of making her sit still on the couch like a little lady.  Yes, I really am going to read the ingredient labels of every single thing on the table before I put it on Ellie’s plate.  No, I’m not going to make Laurel hug or even talk to you.  So back off.

6.  Gifts Gifts Gifts

1-Corinthians-12-4

Its beginning to look like consumerism!

Want to know what the girls are getting for Christmas?  Laurel is getting a doctor kit and Ellie is getting a little train set.  They are both getting four things in their stockings, and I’m going to make each of them a stuffed dinosaur.  That is it.  Seriously.  And no, it’s not because we are poor (which we are).  It is because they are three and don’t need anything else.  They don’t care about the newest, coolest toy on TV, because we don’t have cable.  They don’t a Doc McStuffins Princess Sophia Barbie Dream House because they don’t know that they exist.  And you know what?  They aren’t deprived in any way.  They are THREE.  They don’t need iPads or bounce houses or twenty new dolls.  We have enough stuff.  They don’t play with half the toys the already have.  Laurel would rather paint than play.  Ellie would rather dance than dress up dollies.  And you know what?  I’m just fine with that.

 

Again, I really do love the holidays.  It is my favorite time of the year.  I wish you all a happy Thanksgiving, happy Hanukkah,  happy Yule, merry Christmas, happy Kwanza, and a wonderful New Year.

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