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


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.




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.


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.


I was told today that my little girl
should be in a regular kindergarten class.
That she is bright and social and
understands the world around her.
And it turned my world upside down.
Because up until now
I never thought she would be able to do that.
I assumed that when the school told me
she needed to be in a special room
with special teachers,
that they knew what they were talking about.
After all, they are the experts.
They did the tests,
the evaluations,
the observations.
Why would they tell me that she should
be kept away from her peers,
if that isn’t what she needed?
It has been thirty years
since I started kindergarten.
A lot has changed since then.
But it seems that not enough has
Why are schools still pushing
to segregate our children?
Is it because it is easier?
Is it because they don’t want
to try?
Have they lost sight of why
they started working at a school
to begin with?
Didn’t they want to help kids?
Isn’t that why they applied,
long ago?
Then WHY are they trying
to put my baby girl in a room
where she will not reach her
full potential?
Is it the cost?
How much does having
an aide in the room cost?
Does it cost more
than my daughter’s
Does it cost more
than her dreams?
My girl is bright.
She is the sun that shines down,
casting light into the darkest hearts.
Would you dim that light
to save yourself the hassle
of including her?


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.

The mom who use to be you

Gone Girl

Picture 026

Ellie is a runner.

Ever since she could walk, we have had to keep a very close watch on her when we are out of the house.  She doesn’t like to hold hands and will not walk nicely alongside of us like her sister does.  If allowed any bit of freedom at a store, she will quickly scoot off into another aisle, or across the store, or find a stranger’s legs to hug.  I have had to catch her on the threshold of Target, before she toddled into the busy parking lot.

Ellie has no sense of danger, physical or stranger.  Anyone who smiles at her is a friend, and she will happily climb up in their lap or follow them out of the park.  Cars, swings, strange dogs…none of them scare her.  This makes doing things like going to the playground or walking three blocks up the street nerve wracking to say the least.

To foil Ellie’s penchant for wandering, we generally keep her contained when out in public.  At stores, she sits in the cart.  At the park I wear her in my toddler Beco.  For trips to the mall I break out the stroller even though she’s getting too big for it.  She doesn’t always appreciate being strapped in, but at least we don’t have to chase her while dragging Laurel along behind us.  All in all, containment has worked for us up until now.

Last week we went to a Memorial Day picnic.  There were lots of friends and family, and the girls had a bunch of other kids to play with.  Even with the girls’ food issues (Ellie is now gluten AND dairy free), there was lots for everyone to eat.  Ellie discovered the joys of watermelon.  All in all it was a great day.

At the end of the day I went inside to pack up our stuff.  I was in the house for no more than two minutes when someone ran inside and asked if Ellie was with me.  My heart froze as I told them that no, she was not.  I ran into the backyard, up the walk, and through the open gate to the front of the house.  I looked, but I didn’t see Ellie anywhere.  Calming down, I was turning to go search the backyard when another guest yelled, “There she is!”

Ellie was two blocks away, calmly walking down the middle of the street towards an intersection.

I have not run that fast in my entire life.

I called her name.  I yelled for her to stop, to freeze.  She didn’t even look back at me.  She just kept walking towards the end of the street.

Finally, she turned and looked at me, stopping in the middle of the road.  I tried to get her to come to me, but she didn’t understand, so I ran to her and scooped her up.

I have never been that scared in my life.  The image of her, wandering down the road, is burned into my mind.  I keep imagining what could have happened.  I see a car flying around the corner and tossing her little body into the sky.  I see her broken on the ground.   I imagine what would have happened if I had searched the backyard first, if she had two, three, four more minutes alone. I think about how far she could have gotten, how lost she would have been.  When and where would she have been when she realized that she couldn’t find me?  Would some good samaritan have stopped her, asked her for her name, just to find that she can barely talk?  How long until the police would have shown up to help us search?  What if we never found her?

It doesn’t matter that none of that actually happened, what matters is that it could happen again.  We are constantly watching Ellie when we aren’t home.  But it happened once and it could happen again.  She disappeared from a yard full of adults.  Chev thought she was in the house with me.  I thought she would be safe with all of those eyes on her for a few minutes. No matter how faithfully we practice constant vigilance there is that chance that she could slip away.  And I can’t handle it.

The day after the picnic I started searching the web for tips, tricks, and products to help keep Ellie safe.  From squeaky shoes and child trackers to complicated locks and child leashes, I could probably now hold educational lectures on the topic of child elopement.  We have decided on a new pair of squeaky shoes, since she really liked those when she was younger, and a Tile tracker, which doesn’t have GPS, but I really like the features it does have.

We have also decided that Ellie needs more help than we can give her, so we are applying for a service dog.

If you thought that service dogs were only for the blind or people in wheelchairs, you would be mistaken.  Dogs are now trained for everything from sniffing out peanuts for kids with severe allergies to providing the gentle nudge that a child with OCD needs to break a behavior cycle.  The dogs we are most interested in, however, are those which are trained for kids with Autism.  These dogs are trained to be tethered to their charges and to plant themselves on the ground, unmoving, to prevent them from wandering away.  They are also trained to use their sense of smell to find their kids if they do get lost.  The dogs can be trained to provide comfort and support to children, like Ellie, who cannot self-soothe when they get upset.   If a child is constantly waking up at night and can’t fall back asleep without a parent with them, a service dog can be trained to sleep with them, taking the place of the parent, like a fuzzy security blanket.  Or if a child wakes up at night and wanders (another trait that Ellie has developed), the dog can alert the parents that s/he is out of bed.  They can provide support for kids with balance issues, or who need help navigating stairs and uneven ground.  There are so many things that service dogs can be trained to do!

I am currently in the process of getting referrals filled out by two of Ellie’s therapists, and I’m meeting with her pediatrician on Wednesday to talk about her recent behavior and get the doctor’s paperwork filled out.  Then I’ll be mailing it all to 4 Paws for Ability in Ohio.  We are really excited about this new journey we are hoping to embark on.  (em-bark…see what I did there?)  I promise to keep you, my lovely followers, updated on our progress.

Until then, is it ok if I just never let Ellie out of the house again?