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.

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.

Inclusion

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
changed.
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
potential?
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?

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?

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.

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.