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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Straw

We always blame the single straw
That breaks the camel’s back.
Instead of blaming all the weight
Of the others in the sack.

This week my back broke. It must have, because while I pride myself on my ability to roll with the punches, to accept all of the little things that I can not change, here I sit, completely stressed out and overwhelmed.

What was the straw that did me in?  What, as the mother of a child with special needs, after years of tests and diagnosis and medical interventions, finally floored me?

Ellie may have had a seizure.

After finally getting better after months (yes, months) 0f illness, after getting a diagnosis of asthma, after starting three new meds to control that asthma, after learning how to use and inhaler, a spacer, and a nebulizer, after all of that, and just when we thought we were in the clear..she had a possible seizure Monday night.

We aren’t even sure that it was a seizure, but I caught it on video and the pediatrician was concerned enough that he scheduled an EEG for next week with a neurologist appointment to follow.

It was like I could feel something break inside me.

Suddenly everything has hit me so hard.  One more specialist.  One more thing to obsessively Google.  One more possible diagnosis.  One more thing to lose sleep over (because did you know that kids who have seizures in their sleep can stop breathing and die?  I didn’t, but now I do.)  One. More. Thing.

Crack.

There went my back.

With worries about seizures came a whirlwind of other thoughts that have been building up inside me ever since kindergarten started.  How we just don’t seem to have any time anymore.  Now that she’s started getting behavioral therapy we have no free evenings.  None.  Monday- physical therapy.  Tuesday- dance.  Wednesday- occupational and speech therapy.  Thursday- behavioral therapy.  Friday- Shabbat and/or more behavioral therapy.  I work every Saturday.  Sunday is the only day off we get, and we are all so tired that we rarely do anything fun.   And she still only gets half of the therapies that she should get.  We just can’t fit any more in.

I’ve gotten to the point of considering home or cyber school for Ellie, even though I love how much she loves school and all of her friends.  At least she would be able to get all of her therapies and then we could sign her and Laurel up for some of the fun activities they keep asking for, like Little League and Girl Scouts.  Because right now, they are out of the question.

 

I am so freaking tired.

No, everyone is tired.

I am drained.

I feel like I have nothing left to give.

I know that throwing in the towel isn’t an option, though, and that is part of what’s so damn depressing about it.  I have to soldier on.  I have to suck it up, buttercup, and keep on keeping on.  Because there is no other option.  My kids depend on me.  Chev depends on me.  My job depends on me.  My friends depend on me.  No matter how bad I’d like to run away, I can’t.  That’s what being an adult is, I suppose.  But damn it sucks sometimes.

There is a thing called Caretaker Burnout.  If you’ve never heard of it, you are looking right at it.  I know what it is. I know I have it.  What I don’t know is how to make it go away.  No amount of “me time” is going to fix it.  I just spend the time thinking and worrying about the same things I think and worry about the rest of the time.  Someone suggested I join a support group for parents of kids with special needs.  Like I can fit one more monthly meeting into my schedule.  I don’t know if there is a cure.  I think it just becomes part of your life.

I’ve been tired for so long that I don’t remember what it’s like to wake up refreshed and ready to start the day.  But I can still usually put on a happy face and feel pretty optimistic about our prospects as a family. Today I can’t.

Damn straw.

Food Snob

I'll cook anything for love

I’ll cook anything for love

It all started with a simple question.

A friend and I were discussing what we were making for dinner.  I told her that I was making meatloaf and mashed potatoes.  She then said, “Oo!  Meatloaf!  Can I have your recipe?!”  I don’t have a recipe for meatloaf, and I told her so.  She got a sort of miffed expression on her face and told me I didn’t have to be such a food snob.

A food snob?  Me?  I’m not talking about making duck a l’orange here.  I’m talking about meatloaf, one of the most basic staples of housewives for generations.  So I asked her to elaborate, and she told me that this isn’t the first time I’ve told her that I didn’t use a recipe for something I was cooking.  That in the past she has asked me for my recipe for something and I’ve just rattled off a list of ingredients and instructions to her, when she really just wanted me to email it to her later.  She said it made her feel like I was acting superior to her, because she didn’t memorize things so easily.

Whoa there, I told my friend.  I use recipes a LOT.  I’m always making new stuff, and thanks to Pinterest, my family never gets a chance to get bored with any of it before I find something new to make.  I have a folder stuffed with recipes that I’ve copied down from online, recipes I’ve ripped out to magazines, and recipes that I’ve collected from family members.  I have very few things memorized.

She scowled and said that making new stuff all the time makes me sound even snobbier.  She makes the same basic stuff all of the time “like a normal person.”  Apparently I make her feel like she’s not doing enough, like she’s a bad wife and mother.

Ok, hold up.  Is it me, or are you seeing this a lot lately?  Moms feeling like they are in competition with each other?  Or that they aren’t as “good” as other moms?  Me too.  And it needs to stop.

Look, I told my friend, just because I can make stuff without a recipe doesn’t mean that you aren’t as good of a mom as me.  It means we grew up differently and have different priorities.

I grew up in a house where most stuff was made from scratch.  We didn’t have a lot of convenience foods around.  I didn’t know that mac and cheese could come from a box until I was in high school, and didn’t actually taste it until I was in my twenties.  Take-out didn’t really exist yet, and nobody delivered to our farm.

I can remember my mom teaching me how to make meatloaf when I was a kid. I thought it was cool because I got to smush it with my hands.  I’m sure she was quite willing to pawn that job off on someone else.  My mom was (and still is) a pretty boring cook, and most meals consisted of meat, starch (usually potatoes), and (frozen) veggies.  Rice was exotic.  Spices didn’t move much beyond salt and pepper.  She was an awesome baker, however, and some of my fondest memories revolve around cookies, cakes, and pies.

From the time I was 14 to 17 my mom was the Camp Director at a Girl Scout camp, and she was only home every other weekend for the entire summer.  Since my dad worked all day, it fell to me to do the cooking, cleaning, and laundry.  I still hate cleaning and laundry, but I really fell in love with cooking during this time.  My dad has a much more adventurous palate than my mother, keeping a cabinet full of things like Thai spices and lentil soup mixes that he cooked for himself on weekends.  Because of this, I felt that I could branch out from mom’s standard recipes into unknown territory.  I searched through cookbooks and cooking magazines for fun new things to try.  Sometimes I crashed and burned.  I remember when we decided to try making General Tso chicken at home.  It was so bad that we went out for pizza.  But most of what I made was really good.  I learned new techniques, and more importantly, I learned how to put together flavors.

In college I was the only one of my friends who lived in an apartment instead of the dorms.  The food on campus was….sad.  So I’d invite my friends over to my place and cook for them.  They would take turns asking for stuff they missed from home. (Non-mushy pasta was a theme.)  For the end of the year, I made five cornish game hens, each stuffed and seasoned with different stuff.  It was during college that I realized that food could bring joy and comfort.

Fast forward to the present, where I have a spouse and two kids to feed.  All three of them are pretty picky, so my cooking is limited to what I can actually convince them to eat.  (The girls are more persuadable than Chev, by the way.)  I don’t really cater to the girls’ tastes, because it is my opinion that four year olds don’t have the experience to tell me definitively what they do and do not like.  So I cook what the grown ups like, and if the kids don’t eat, well, then they don’t eat.  But I really like when I find a new recipe that all of us like, and I don’t want to fall into a rut, making the same handful of things all the time.  I cook for fun as well as for fuel.

And there is the difference between my friend and I.

I’m not really a food snob.  I just really, REALLY like to cook.  I’ve been cooking for twenty years.  I love combining new flavors, trying new spices, and figuring out delicious ways to get my family to eat things they all claim to hate.  If I were young and single, I’d be a food writer and eat my way across the globe.

My friend didn’t grow up cooking.  She just wasn’t interested in learning how to cook from her mom or grandmother.  She was in sports, choir, 4-H, and band.  She had practices every night of the week.  In college she lived in a dorm and lived off of Ramen noodles.  Now she is married and has the cutest little boy I’ve ever seen.  For the first time in her life, she has found herself to be the person in charge of putting food on the table every night, and while she has basic cooking knowledge, she is no master chef.  Cooking just isn’t her thing.

And you know what?

That is ok.

We all have our own strengths.  My friend is super active.  She takes her little guy to the park almost every day.  She runs, plays tennis, and sings in her church choir.  Her son is in karate and t-ball.  Her hubby just did his first half marathon.  Their Facebook photos all depict them doing fun things like hiking, swimming, and having epic snowball fights.

They make me feel bad about me.

The fact is that the only kind of marathon I’m interested in involves Doctor Who and a large tub of popcorn.  My kids watch too much TV.  Chev and I are much more on the sloth end of the activity spectrum than the cheetah end.  I have zero desire to hang out in the frozen tundra of our yard while Laurel chucks snowballs at me.  I fear that we are raising the next generation of couch potatoes.

I explained this to my friend, and she got very quiet for a few minutes.  Then she hugged me.  She told me that she was afraid that I thought she wasn’t a good mom because she would rather go for a run than bake cookies with her kids.  I laughed and told her that I figured she thought I was a bad mom because my kids watch so much television.  It was like a barrier had broken down between us.  We were no longer judging ourselves by how we thought other people saw us.

We were just moms, talking about what we were making for dinner.

 

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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