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.

 

Why I’m Tired

Someone asked me why I’m so tired all of the time.  At the time, I just said that I didn’t sleep well and left it at that, but the reality is that there is so much more to it.

Why am I tired?
Here’s why…

I am tired because in almost 6 years, Ellie has slept through the night maybe six times.

I am tired because Laurel is a very willful child who knows how to push every button I have.  Having the same arguments over and over again is mentally exhausting.

I am tired because in addition to her pediatrician and dentist Ellie sees seven different specialists, and it is my job to keep track of all of her appointments.

I am tired because every week Ellie has two half-hour sessions of speech therapy, two sessions of occupational therapy, a session of physical therapy, four hours with a behavioral coordinator, and fifteen hours split between two different behavioral therapists.  That’s right 21 1/2 hours of therapy.  Every week.

I am tired because I am now homeschooling Ellie, and most days she’s too tired to pay attention to half of what we do.

I am tired because Laurel wants more one-on-one time with me, so instead of relaxing on the weekend I try to squeeze in as much time with her as I can, which means that I have to cram things like cleaning in at night…the only other time I have to relax.

I am tired because keeping a house even relatively clean while having small children is one of the most futile battles a person can fight, but with therapists in our house 19 hours a week I have to do my best so they don’t call CPS on me.

I am tired because Ellie’s favorite word for three years has been NO.  She has also recently added the phrase “I can’t” to her repertoire.

I am tired because I have to feed a family of four (three of whom can’t have gluten, two of whom can’t have dairy) on a single, small income.  Not to mention pay the mortgage, the electric, and everything else.

I am tired because I have seen every episode of Sophia the First so many times that I can recite them all.  And the Lorax.  And Frozen.  And Mary freaking Poppins.

I am tired because every time we leave the house, I have to be on high alert, making sure Ellie is secure so she can’t wander off, dart into traffic, or happily go home with a stranger.

I am tired because it is my job to keep track of all of Ellie’s medications.  And Laurel’s.  And my own.

I am tired because I’m constantly watching my kids for signs of other issues.  Laurel may have ADHD.  Does Ellie just have Sensory Processing Disorder, or is she actually showing signs of Autism?  Is that eczema?  Not ringworm again!

I am tired because I don’t get enough exercise, and I don’t eat as well as I should.  How do people fit exercise into their schedules??  Also, pass the ice cream. I’m going to eat my feelings while binge watching NCIS.

I am tired because people expect me to be happy all the time, but most of the time I feel overwhelmed and lonely.  Being a mom is hard.  Being a mom of twins is harder.  Being a mom of a kid with special needs is harder still.  But people make it seem like if you admit that, you’re a bad mom.  I’m suppose to cherish every moment.  But some moments suck.  Some suck so bad that I want to hide in the laundry room and cry and never come out.

I am tired because when people ask how I’m doing, they don’t really want to know.  No one wants to hear that my day has sucked.  They have their own crap to deal with.

I am tired because I don’t see an end to being tired.  When I look ahead, I can’t be sure that I will ever get enough sleep, or be able to stop worrying.  Every stage brings new things to stress about.

I am tired because I’m a mom.

When Inclusion isn’t Right

Inclusion.

It is the new “thing” for kids with Down syndrome and other special needs.  Instead of having them stuck in a special education room, separate from their typical peers, as they have been since I was a child, they are included in the typical classroom.  The idea is that having everyone together will promote better understanding of differences for the typical peers, while giving the kids with special needs a sense of belonging and challenging them to be the best they can be.

If you have a child with special needs, and you belong to any kind of parent group (in real life or online), you know all about inclusion.  It is all some groups talk about.  It is the right thing to do!  It is the only way!  You must push for inclusion or you are doing your child a huge disservice!

At least that’s how it seemed to me, when the time came to enroll Ellie in kindergarten.  The thing was, I wasn’t sure about all of that.  Ellie has some pretty significant delays, and I really didn’t feel that being in a typical classroom all day was right for her.  So we opted to have her in the Life Skills (the new name for special ed) class for the majority of the day, with only a small fraction of her time spent in the typical class across the hall.

It worked for her for the most part.  With her speech delays and the fact that she couldn’t even draw a proper circle yet, it made sense for her to be in a smaller class where she could get more one on one attention.  She was being taught the same things as the kids in the typical class, but on a slower schedule. The typical class spent one day on each letter.  Ellie’s class spent two to three days on each letter.  If Ellie got tired (as she often does) she could curl up on one of the little mats and take a short nap, then wake up ready to learn some more.  The kids in her typical class loved her, and whenever she missed school would ask when she was coming in.  We’ve been working on having her in the typical more and more as the school year goes along.  Because inclusion is the way to go, right?

The problem was that Ellie was missing more and more days of school.  The plethora of germs that abound in a kindergarten classroom were doing a number on her health.  While other kids (like Laurel) can get a cold and be over it in a couple days, when Ellie gets sick she stays sick for a week or more.  Then, around Thanksgiving, she got really sick.  And didn’t get better.  After three rounds of antibiotics, several chest x-rays, nebulizer treatments, and missing a month of school we finally saw a pulmonologist who diagnosed Ellie with asthma. With the help of yet another round of antibiotics to clear up the pneumonia she had developed along with a new regime of asthma meds, she finally got healthy.

Then she went to school for a week.

Luckily we’ve been snowed in this entire week, because she’s sick again.  At least it won’t count against her attendance, since the school has been closed.  We are just hoping that she’s well enough to go to school on Monday.  I haven’t looked at the numbers lately, but I’m fairly sure that she’s been out of school almost as much as she’s been in.

During her two months of sickness, Ellie’s pediatrician said something to me that really stuck.

“I don’t think that school is good for Ellie’s health.”

I laughed it off at the time, because really, what was the alternative?

But it’s been in there, in the back of my brain while we’ve worked to get Ellie better, and it’s made me really reevaluate what Ellie needs vs what the Down syndrome community as a whole has been pushing for.  At what point does the push for socialization and interaction with her peers get outweighed by her need to stay healthy?  How much education is she really getting, when she is missing days, weeks, even a whole month of school?  What, really, are the alternatives?

Luckily, we live in Pennsylvania where there are a lot of educational options, from public and private schools to charter schools, homeschooling, and cyber schools.  Laurel attends a public charter school for the arts, but a brick and mortar school of any kind would cause Ellie the same problems as her current situation.  That leaves home and cyber school.  I know myself too well to pretend that I have the discipline to homeschool my child.  I need to be accountable to someone or I will let her slack off.  That leaves cyber school, which will give us the flexibility we need (we’ll actually be able to get Ellie all of the therapy she’s suppose to have, since we’ll be able to do it during the day), the ability for her to learn even when she’s home sick, and keeps me accountable because we have to login every day.

I am meeting with PA Cyber’s IEP team in a couple weeks to talk about pulling Ellie from her current school and enrolling her in cyber school.  I am doing the least inclusive thing I possibly could.  And you know what?  That’s ok.  Because sometimes inclusion isn’t the right answer.  Sometimes your child’s immune system can’t handle being in a class of 20 other germ infested five year olds.  Sometimes interaction with that many kids is too overwhelming for all of their senses.  Sometimes school is just too much for your child’s body, mind, and spirit.

Sometimes you have to listen to your gut, not the mommy group.

I think that inclusion is a great thing, and that it does a lot of kids a world of good.  But it just isn’t right for us right now.  Maybe when she’s older and stronger she’ll be able to handle being in a brick and mortar school.  For now, we’ll keep her home and let her immune system have a break from the constant onslaught of germs and stress that she’s been dealing with since September.  We’ll have more control over her schedule and her education, and that is what’s best for Ellie.

 

 

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.

Advice

To the girl at the playground today,

When Laurel and I showed up at the playground this afternoon and saw fifty middle schoolers swarming the place, I had my doubts about how the day would go.  When it became obvious that someone had seriously screwed up while planning a “fun” field trip for a bunch of 12-14 year olds, I was wary.  But most of the “big kids” were just hanging out in the shady spots, talking and screwing around on their phones, so we braved it.

Things went pretty well. Laurel ignored your classmates.  Your classmates avoided us.  All was well.

Then I saw you.  Dark hair streaming out behind you as you ran like a gazelle, dodging around toddlers and jumping the balance beam like it was nothing.  I heard the other kids, chasing after you, yelling that you were going to die if you didn’t give back what you had taken.  I saw your whirl around, the sweater tied around your waist spinning behind you like a cape.  I saw the fear and the defiance in your eyes as you stood your ground, turned out your pockets to show you had nothing that belonged to anyone else, staring down the group of five or six kids who had falsely accused you.  I did not hear what they said to you, but I heard you reply, “I have a lot that I’d like to say right now, but I don’t think it would do any of us any credit.”  I saw you turn away, calm on the outside but seething on the inside.

I watched you while I kept an eye on Laurel.

I saw you climb to the highest platform and sit in a tunnel until two little boys wanted to go down the slide.  You moved aside for them before sliding down yourself.  I saw you walk toward the swings, but decide against it.  They were filled with girls from your class, but you didn’t want to be with them.  I saw you moving from place to place alone, looking busy, purposeful, unconcerned.

I saw you.

And I saw myself.

I remembered the hurt and anger and humiliation that I felt at your age.  I remembered acting like I didn’t need anyone to talk to or hang out with, even though the rest of the class had formed into groups.  I remembered feeling different, other, alien.  I remembered how much I longed for that close friendship that so many of my peers felt with each other, but that I never really felt.  I remembered feeling like an outsider, wanting to come in but not knowing how.  I remembered how lonely it was.

I saw you.

I saw myself.

Acting tough, unflinching, unflappable, untouchable.  Wishing I could connect like other people.  Wishing I could make life-long friends like my mom, like the people in stories, like the Ya-Yas or the Sisterhood of the Traveling Pants.  But I never figured it out. I always felt awkward or uncomfortable sharing myself with other people.  I still do.  I don’t have close friends.  I have a zillion great acquaintances.  Everyone likes me, and I like everyone, but I can’t connect on a deeper level with most people.  I grow bored of drama.  I stop caring about their personal problems.  I have a really hard time dealing with the details of their lives.  I don’t have the energy for many people other than my own family.  Relationships exhaust me.

Apparently this makes me an introvert.  An outgoing introvert.  Who knew there was such a thing?

My first thought was that I’d like to pull you aside and teach you two very important words.  Words that will save you a lot of heartache in the years to come, until you find your niche, your groove, your place in life.  Words that will help you keep up that wall that hides your ever-so-fragile heart.

I wanted to teach you to say, “Fuck Them.” and mean it.  Really mean it.

I wanted to make you understand that the people in middle school don’t matter.  By the time you are in college, you won’t even remember most of their names.  One day you’ll get a friend request from them and you’ll wonder who the hell they are.

I wanted to show you that these people have no real bearing on your life, so you shouldn’t let them make you feel like crap.  If they don’t like you, Fuck Them.  You don’t need them to like you, even though you think you do.  You’ll be fine on your own until you find the people you really fit in with.

I tried so hard to fit in with all the wrong people when I was young, because I hadn’t found the right ones yet.  I wanted to be cooler than I was, tougher than I was, older, badder, more mysterious.  But all I ended up doing was becoming someone I wasn’t.  I made really bad decisions.  I should have said Fuck Them, but I didn’t.

I saw you.

I saw myself.

I decided that you really didn’t need to be told how to become harder.  Your shell was pretty thick already.

I decided that what you really needed to hear was something that I wish someone had told me.

It gets better.

Whatever shit you are going through, kid, it will get better.  Just hang in there.  You only have a few more years until you can escape to college or New York or wherever your heart leads you.  Put your head down, don’t let them get to you, keep your skin thick, and laugh at their pettiness.  And when you come of age, get the hell out of here.  Don’t think you have to stay.  Don’t think the world is too big for you.  Don’t just stay here, trudging through life, waiting for it to change.

Go and find your people.

They are out there.  No matter who you are, somewhere out there are like-minded individuals who will welcome you into their clan.  Find them.  Whether they are artists or writers or scholars or musicians or architects or accountants, there is someone for everyone.  Don’t look for the people you THINK you should like.  Look for the people you FEEL are right.

It will get better.

One day you’ll realize that 12 year olds are assholes to everyone, especially to each other.  Its a really tough age, but if you do your best to ignore the haters you’ll make it through.

Until then, keep standing up to the kids who try to drag you down.  Don’t let them pull you down to their level.

Fuck Them.

It gets better.

Sincerely,
The mom who use to be you

Mission: Denim Directive

shopping 2

Shopping with preschoolers can be fun.  Shopping for clothing for myself accompanied by the girls, however, is more like a military operation than any kind of enjoyable experience.  It requires speed, agility, intelligence, and bribery.

Step one:  (while still in the car)  “We are here to buy jeans for Mama.  There will be NO touching of the items in the store.  You MUST stay with me.  If you behave, we will go see the puppies at the pet store.”  Firmness and bribery work wonders.

Step two:  Arrive at the store just as they are unlocking the door, so we are the only customers.  I refuse to have my kids ruin anyone else’ shopping experience.  Nobody wants my kids asking them why they want lacey underwear, or voicing their opinion on the color of bra they have picked out.

Step three:  I go directly to the wall of jeans, ignoring any and all other clothing displays.  This is no time to browse.  We are on a mission, people!  No, don’t look at the cute new tops in the center of the store.  Pretend you have blinders, woman, and go for the denim.

Step four:  With one hand holding on to Ellie’s hood, quickly scan the bootleg jeans’ tags for the size I think I am, repeating to Laurel that no, she can’t hide behind the dresses on the rack next to us.

Step five:  Loudly announce that we have to go back to the fitting rooms so I can try on my jeans, thus alerting the store employee and my children that we are moving into Phase Two.

Step six:  “You can use the handicapped room, ma’am.”  Thank you, kind salesperson.  You obviously have children of your own.  Now we have containment.

Step seven:  Encourage the girls to amuse themselves by looking in the three-way mirror while I try on the first pair of jeans.  They are too big.  Crap.

Step eight:  Lock the kids in the fitting room and run back out to the jeans wall in my socks, frantically scan the tags for a smaller size, and run back before Ellie realizes that she can crawl under the door and escape.  Too late.  Ellie is missing.  I hear her giggling from the next fitting room.  Which is locked.  I coax her back out with the promise of puppies later.  Listen to sales lady laugh at me.

Step nine:  Get my old jeans back on, look for my shoes.  Where the hell are my shoes?  Laurel, get back here!  Why are you wearing my shoes?  Where are YOUR shoes?  No, Ellie, get back in here!

Step ten:  Take my new jeans up the counter.  Yell at the girls to GET BACK HERE RIGHT NOW while answering the nice sales lady’s questions.  Yes, I have a charge card.  Yes, I have a coupon.  No, I don’t want you to order another pair for me in the lighter color I really wanted.  I don’t have time for that.  No, I don’t want to spend five more dollars so I can save ten.  Nothing in this store costs only five dollars.  IF YOU TWO DON’T GET BACK HERE RIGHT THIS INSTANT WE ARE GOING STRAIGHT HOME.

shopping

Step eleven:  Push purse up to shoulder and shopping bag onto wrist.  Grab the girls’ hands, and head for the doors.  “Mama, I have to go potty!”  Of course you do.

Step twelve:  Beg sales person to let us use the employee-only bathroom.  Thank them profusely.  Pick up Ellie so she can’t run off while we wait for Laurel to go potty.  Hold her as she struggles and yells “DOWN” over and over.  Ask Laurel if she needs help.  No.  Try to get Ellie to calm down by dancing around and being silly.  Get smacked in the face.  Ask Laurel if she is done yet.  No.  Try swinging Ellie around in circles to amuse her.  “DOWN DOWN DOWN!”  Laurel, you need to be done now!  I need help!  Put Ellie down and try to keep ahold of her hand while propping the bathroom door open with my foot and reaching inside to push the soap dispenser for Laurel.  Lose grip on Ellie.

Step thirteen:  Catch Ellie before she can pull down an entire display of necklaces, grab Laurel’s hand, and head out to the car.  “Mama, what about the puppies?!”

Step fourteen:  Go to pet store and look at puppies.  Remember how much easier life was when we just had dogs.  Wonder if the store would take a trade.

puppy

Danger!

Laurel and I have been talking a lot recently about what to do in scary situations, like if she gets separated from me in various places, and about stranger danger. Now that she is getting older and more independent, she needs to know what to do in emergency situations, and I want her to be prepared so that she doesn’t have to think about her responses, she just does them.  So I’ve come up with some ground rules, and I thought I’d share them with you.  If you have any other suggestions, let me know in the comment section!

What to do if…..

1.  You can’t find me at the mall/store.  Being separated at the mall is probably the most likely scenario that families run into.  The kid gets distracts and wanders away, or they are looking at something and mom turns the corner and keeps shopping, not realizing that junior has stayed behind.  Usually a few loud yells will bring the family together, but not always.   What I have told Laurel to do is sit down on the ground and ask the first mom of little kids that walks past her for help.  Because a kid wandering or even running through the mall won’t get your attention like a four year old sitting down on the floor by themselves.  When she’s older, I’ll tell her to find a store employee, but at the age of four (and a half), she can’t really tell the difference between most grown ups, and since we all know that all adults aren’t created equally, I want her to ask someone safe for help.  The safest demographic is moms of other small children, so that is who I want her to look for.

2.  You can’t find me in the woods. We do a lot of hiking in the summer, and it is entirely possible that at some point Chev and I will be distracted by Ellie or the dog and Laurel will wander off.  Similar to the mall, our plan is for her to sit down on the ground and yell as loud as you can.  Kids have a tendency to keep moving in the same direction when they are lost, sometimes walking for miles looking for their parents.  They don’t know how to double back or really search an area for their families.  The best thing a small child can do is stay in one place and yell until someone finds them.

3.  A stranger asks you to help them.  Stranger danger time!  Laurel knew right away that she shouldn’t go with anybody she doesn’t know, BUT, when I asked her what she would do if someone told her that they lost their puppy and needed help finding it, she automatically said she would help them look for it.  I had to really work with her to get her to understand that she couldn’t help the person right away.  She must come find me so I can help.  That way, we can look for the puppy together.  She didn’t understand that there might not be a puppy, so the best I could do was convince her that if I helped, the puppy would be found more easily.

4.  Someone you know asks you to come with them.  The fact of the matter is that 90% of child abductions are done by people the kids know.  Scary as it may seem, strangers aren’t the real danger.  Your neighbor, bus driver, grocery store clerk, or mailman is much more likely to steal your child than some random lunatic at the toy store.  So it is really important for Laurel to understand that she can’t go anywhere with someone, even she knows them, until she asks for the password.  We picked something that is easy enough for her to remember, but weird enough that no one would guess it.  We are going to have to really go over this one several more times, but she really likes the idea of s secret word, so there is hope.

5.  Someone grabs you and tries to put you in their car (front seat edition).  It isn’t likely, but kids should know what to do if this happens.  Our plan is for her to lock her arms around the steering wheel, thrash, scream, and generally freak out until you can get away.  You can’t abduct anyone if you can’t drive away, and you can’t drive away with a crazy child locked onto your steering wheel.  Yes, an adult would probably be able to pry her off after a few minutes, but in the mean time, she would be drawing a heck of a lot of unwanted attention to them.

6.  Someone grabs you and tries to put you in their car (trunk edition).  Again, drawing attention to herself is key, so we want her to scream, bite, kick, and claw her abductor, and if that doesn’t work, kick out the taillights from the trunk.  Granted, she’s pretty little, but I showed her where the lights were in the trunk of our car, and told her to kick the crap out of them if someone put her in their trunk.

7.  FIRE!  If the fire alarm goes off, the last thing you want your kid to do is hide from it.  Turn that sucker on and let them hear what it sounds like before they ever need to know.  Every family and every house will have a different plan, but since the girls’ bedroom connects to ours, we want them to come to us if the alarms go off at night.  Otherwise, they are to get out of the house any way they can and stand by the car or the back fence.  Either way, they will be far enough from danger, but still clearly visible.  I am also working on teaching Laurel to crawl under smoke and not to open doors that feel hot.  We will work on evacuating from the second floor when they are a bit older, but I think we are set for now.  We have also looked at pictures of firefighters in full uniform, so they aren’t scared of the masks and hoods.

8.  Mama is hurt!  This is a tough one.  After spending four years telling Laurel not to mess with the phone, I am  now trying to teach her to dial 911 if I get hurt.  I’m thinking of getting one of those silver Sharpies to write 911 on each of the phones, just in case.  I’m also making sure that Laurel knows how to completely unlock the front door, including the deadbolt.  I don’t want the EMTs to have to break it down, after all.  She also knows to tell them that Ellie is in the house, in case she is hiding.  I don’t want to wake up in the hospital to find that they only picked up one of my kids!  The only other things I want to teach her is to lock Foster in the laundry room (so he doesn’t eat the paramedics), and to grab my wallet out of my purse.

Thankfully, most of these plans will never have to be used, but if something DOES happen,  I want Laurel to know how to react.  In the case of abduction, the worst thing a child can do is nothing.  If they freeze, they are lost.  On the other hand, if she is separated from me, I WANT her to freeze.  Having a plan and talking about these scenarios with your kids makes them a lot less scary when they happen.  However much we hate to introduce our children to the idea that there are dangers in the world, it is so much worse to consider what could happen if we don’t prepare them.  Keep your kids safe, even when you aren’t around.  Make a plan!

Five Years

March 21st is World Down Syndrome Day, and I it occurred to me today that that means that it has been five years since I found out that our little Ellie Bean had Ds.  I was 18 weeks pregnant when we had the amnio done, and it was about a week until we had the results back, making March 21st pretty darn close to the day we found out that she had an extra chromosome.

We had our suspicions before-hand. The extra fluid on the back of her neck at the 12 week nuchal translucency test (when we also found out that we were having twins), combined with the particular heart defect that she had pointed at Down syndrome.

But it was still a shock to the system, holding the print outs of our (now confirmed) girls’ chromosomes in our hands and seeing the third copy of number 21 sitting there.  I remember calmly talking about what this all meant with a very nice genetic counselor, who tried really hard not to cringe when she told us that we still had the option of trying to selectively abort one baby, but that at this stage it was very possible that I would lose both in the process.  She was visibly relieved when we told her that abortion was out of the question.  We loved our girls, no matter how many chromosomes they each had.

Then I went home and cried.  A lot.  I’m not going to lie about it.  I was heartbroken.  Not at the thought of having a child with Down syndrome, per say.  I didn’t have much experience with people with Ds, but from what I had seen, they seemed like pretty happy, healthy folks.  I was the loss of all the things I had envisioned for my child that hurt so much.  She would never drive a car.  She would never go to college.  She would never get married and have babies of her own.  She would never be a famous writer or artist or doctor or dancer.  Would people make fun of her?  Would she sit in her room, crying, because her sister had a date to the prom, but no one had asked her?  Would she watch Laurel drive off to college and wisht that she could go, too?

After a couple of pregnancy-hormone fueled days of this, I hopped online and started doing some research, where I found that most of my fears were completely unfounded.  People with Down syndrome do all of the things I thought she wouldn’t.  I had an image of Ellie being shunted off to a dreary special ed room with the other “disabled” kids, like when I was young, but that isn’t how things are done any more.  Next year, when she starts kindergarten, Ellie will spend a decent part of the day in a regular classroom with the “typical” kids.  She’ll have extra help, of course, but it really isn’t like it use to be.  One day Ellie will go to the prom, and there are more and more colleges that are opening their doors to kids with special needs every year!  Our little Bunny’s future is pretty darn bright, and you had better believe that she isn’t one to feel sorry for herself.

A lot has changed in the past five years, but some of the biggest changes are happening right now.  For the first four years of Ellie’s life, she was, quite frankly, coddled by Chev and me.  She was our baby long after Laurel started to become her own little person.  The combination of Ellie’s developmental and speech delays made her more apt to sit in my lap and snuggle than to explore the world.  But something has changed.  Ellie is starting to talk, and that has made her bolder, more confident.  She has found her voice and at the same time she seems to be finding herself.  It is a fascinating thing to watch.  Just in the past few weeks, she has started to string words together into short sentences, and she can now hold a conversation with us about simple things.  She has NO problem giving her opinion, either, and woe betide the person who tries to ignore her when she wants their attention.  She is growing into her own person, and that person is pretty fantastic.

I can’t wait to see what she’ll be like in five more years.

Also, if you are interested in learning more about the college opportunities for people with Down syndrome, or are feeling generous, check out Ruby’s Rainbow and take their 3/21 pledge.  The Ellies of the world thank you.

The Eating Styles of the Cute and Picky

Ah, dinnertime.  That once-a-day ritual that I so looked forward to when I was pregnant, dreaming of the perfect little children I was growing in my tummy.  In my mind, lit with the warm glow of the chandelier, I could see Chev, myself, and the girls sitting around the table, eating a healthy, lovingly cooked meal, quietly talking about our day.  The girls would, of course, have amazing pallets, eating everything from steak to tilapia happily.  (You know, because I was going to start them out early, getting them to try exotic flavors as babies.)  We were smiling, even laughing.  There was no crying, screaming, or throwing of food.  Not at MY dinner table.

Oh, what a fool I was.

The reality of trying to feed two four-year-olds and two adults who all have very different tastes is a heck of a lot more difficult.  Despite my best efforts, and their early willingness to eat whatever I put in front of them, the girls have become two very picky eaters.  We often liken them to Jack Sprat and his wife.  When it comes to food, they are complete opposites, but put together they can usually polish off a meal.  Ellie will happily devour any kind of meat, except hamburger, often asking for more.  She will not, however, touch vegetables.  Laurel will eat a bite or two of meat, then scarf down all of the corn, peas, and potatoes on her plate.  Ellie likes all noodles equally, and will eat them no matter what you cover them with, from alfredo to pureed spinach.  Laurel will only eat spaghetti-shaped noodles, and only with marinara sauce or butter.  Ellie isn’t a sweet-eater, preferring pretzels and crackers over cookies and cakes.  We have to hide candy and baked-goods on top of the fridge, where Laurel can’t reach them.

So dinner time, instead of being a peaceful time to bond over reflections of our day, is now a stress-filled half hour full of cajoling and threatening the girls into eating at least three bites of each food on their plates.  Laurel, at least, can be reasoned with.  She will eat something she doesn’t want to eat, but she will make a face like it is going to kill her, and she has limits.  She will eat three bites of something, but that is IT.  Don’t even try to convince her that since she said she liked something that she should eat more of it.  The idea of eating ALL of something she doesn’t love makes her brain explode.  The explosion sounds a lot like whining.

Ellie won’t take a bite of something she doesn’t like the looks of.  Not even one bite.  It doesn’t matter how long we make her sit at the table or how many cookies we try to bribe her with.  It just isn’t happening.  I honestly think that if someone told her she had to eat a single pea to save my life, I would be quickly be meeting my maker.  You can sing Daniel Tiger’s song about trying new food until you turn blue; my stubborn little girl isn’t going to open her mouth.  If you really push the issue, Ellie will completely shut down, turning sideways in her booster seat and crying uncontrollably, thus ending any hope that we had of her eating even the foods on her plate that she does like.

I don’t want you to think we just let them get away with bad dinner behavior from the get-go.  We have tried everything we can think of to get the girls to eat: I’ve read all of the blogs, scoured Pinterest for cute ideas, talked to other moms.  And you know what?  None of that crap works.  I get Laurel involved in cooking dinner all the time, and she’ll tell me that she LOVES vegetable soup….until it is sitting in front of her at the dinner table.  We’ve tried making them sit at the table until they eat all of their food.  (We couldn’t take the crying after 45 minutes.)  We tried not letting them have anything else to eat all night.  (Ellie woke up crying in the wee hours of the morning, and Laurel woke up at 5am starving every single time.)  We tried bribery.  (Ellie doesn’t care about cake enough to eat three kernals of corn.)  We tried threats.  (No TV after dinner if you don’t eat = penalizing myself WAY too much.)  We’ve tried talking to them as if they were logical human beings.  (*snort*  Yeah, that didn’t work.)  The list goes on and on.

Really, the only part of my pregnancy daydream that has come true is the healthy, lovingly cooked meals I provide on a nightly basis.  Even the chandelier is a let-down, since there is always at least on bulb burned out.  (What is up with that, anyway??)  Basically we have resigned ourselves to not having a peaceful meal together for at least another five years.

And you know what?  I’m ok with that.

I know that one day they WILL eat what I put in front of them.  One day Laurel will ask me for seconds of chicken.  One day Ellie will ask for a second helping of roasted veggies.  One day they will be in college, eating mushy meatloaf, and they will think, “Man, I really miss mom’s cooking.”

I know because I was one of the pickiest kids to ever walk the Earth.  I spent an entire year of my life eating nothing but peanut butter sandwiches.  No, really.  That’s it.  Peanut butter on white bread.  And now I’ll eat almost anything.  My dream vacation would be to eat my way across the globe.  I drool while watching cooking shows, and wish I could afford to go to high-end restaurants.  If I ever win the lottery, I’m going to weigh a million pounds.

So, if you have a picky kid, remember, it isn’t the end of the world.  Just go with what they WILL eat and keep trying.  Fight the good fight, my friends.

Carrying On

Today is a bitter-sweet day at our house.

Today I am saying goodbye to a faithful friend, one who has really lended me support over the past few years, one on whom Ellie has depended on many occasions.

I am, of course, talking about my Ergo baby carrier.

That’s right, after four solid years of use, Ellie has out-grown her Ergo.  I couldn’t have asked for a better carrier.  My only regret is that I didn’t get it when the girls were first born, because it would have really made those first few months a lot easier.  As it is, the Ergo enabled me to do things that would have been impossible without it, like hiking, going to the fair, and eating with both hands when Ellie was sick and refused to be put down.  I love my Ergo.

All good things must come to an end, however, and it is time to pack up my old friend and send it off to someone else, who I can only hope will appreciate it as much as I did.  While still technically under the weight limit, Ellie is simply too big to fit comfortably in the Ergo now, and it has been getting progressively less comfortable for me to wear her on my back over the past six months.  So farewell, old friend.  You will always be remembered as the single most useful baby item I ever owned.

“But wait,” you say, “You said today was bitter-sweet.  Where is the sweet part?”

Well, my friends, let me introduce you to the newest addition to our household…..

Picture 117The Beco toddler carrier.

Picture 125Holy crap is this thing awesome.

New to the relatively small market of toddler carriers, the Beco is all that I could wish for in a carrier.  Besides the considerable size difference between my baby Ergo, I am loving the way it is constructed.  The waist clip is adjustable from both sides, so it can be clipped right in the middle, which I find a lot more comfortable.  The shoulder straps are SO much cushier than the Ergo, and they are really easy to adjust.  I’m no longer getting strangled by the chest clip, either, which is a very nice change.  I can even wear her on my front, something I haven’t been able to do for a really long time in the Ergo.  There is a little pocket on the waist band, a snap-on zippered pouch, and an adjustable snap-on hood.  It also comes with a super cute little carrying bag, so there will be no more flailing straps in the back of my car.

Ergo Baby on top of Beco Toddler.  Note the size difference!

Ergo Baby on top of Beco Toddler. Note the size difference!

Look how thick the straps are, compared to my old Ergo!

Look how thick the straps are, compared to my old Ergo!

Where can you get this wonder?  Well, I snagged one from Lil Tulips, and it only took three days to get to my house.  You can’t beat that for service!  Now, I know they are pricey at $200, but I really think they are worth the money.  I am notoriously cheap, but I know that I am going to use this carrier for at least two more years, and some things are just worth investing in.

All packed up in the little storage bag.

All packed up in the little storage bag.

Especially when you have a child who has special needs.  Because while a toddler carrier may be a convenience item for most families, it is pretty much a necessity for us.  Ellie simply can’t walk for long on her own, and hiking is pretty much out of the question.  Add in her dislike for holding our hands and complete lack of stranger danger, and a carrier is a must.  I was really worried about what we were going to do when I realized that Ellie was going to outgrow her Ergo before she could walk really well.  Thank goodness for the all of the babywearing mamas out there who have spurred the carrier companies to create carriers for bigger kids!

Ready to hit the trail.  Or the mall.  Whatever comes first.

Ready to hit the trail. Or the mall. Whatever comes first.

So while we are sad to say goodbye to our friend, the Ergo, Ellie and I are very excited to start our Beco journey… one step at a time.

Someone was sad that this post wasnt about her.

Someone was sad that this post wasnt about her.