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.

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.

The Firsts of Special Needs Parenting

This morning I read a great article about the “other” firsts that parents go through that we never really talk about.  Things like the first time you realized that you can’t call your mom to fix things, because YOU are the mom now.  And the first time you realize that you aren’t completely screwing up your kid.  Go read it.  It’s great.  http://www.huffingtonpost.com/kim-simon/theres-always-a-first-time_b_4641690.html

After I finished reading, I started thinking about the firsts that we, as parents of a child with special needs, have experienced.  So I decided to share them with you.

The first time a doctor looks at you with concern in their eyes and tells you that there is something different about your baby.  Maybe it happens right after your baby is born, when you are exhausted and full of birthing hormones and pain killers.  Maybe it happens a few months later, when your child hasn’t met any of their milestones yet.  Maybe, like me, it happens while you are still pregnant.  But whenever it happens, you won’t forget it.  The doctor with sad, worried eyes, speaking in low, soothing tones about statistics and DNA and special services.  That sinking sensation in your stomach as the words sink in.  The feeling of rising panic and helplessness as you try to figure out how “bad” things are.  The resignation and determination that follows, as you swear to yourself and your child that you will do everything necessary to help and protect them.

The first time someone asks what is wrong with your child.  And the mother bear inside you roars as you calmly explains that there is NOTHING wrong with your baby.  She is just a little different from other babies.  All babies are different and special.  And you will educate them about the syndrome/condition/whatever that your child was born with, and why it is not something that deserves pity, but that should be embraced.  All while screaming profanities at them inside your head.

The first time your child hits a milestone that you have all works SO hard towards.  Kids with special needs often develop at a different rate than other kids.  Laurel crawled at five months.  Ellie crawled at 18 months.  While we celebrated Laurel’s accomplishment, like any parents would, there was a bit more celebration over Ellie’s.  Because she had worked so much harder for it.  We worked on crawling every day for months on end.  Her physical therapist came every week and showed us new exercises to have her do to help strengthen her naturally low-toned muscles.  Mostly Ellie hated it.  She cried.  I cried.  Laurel cried in sympathy.  But one day, right around Christmas of 2011, she crawled across the floor from Chev to me.  And we all cried again, but in happiness.  Laurel danced around us, clapping and cheering for her Sissy.  It was a very good day.

The first major setback.  At some point, you will think that you have this whole special needs parenting thing under control.  Your kid is progressing along in all major areas, a couple of your specialists have told you that your kid doesn’t need to come back, and you are flying high. That is when it happens.  Your kid suddenly stops talking or eating or walking or starts screaming whenever you get them wet or pick them up too fast or dress them in anything scratchy or they get really sick and no one can figure out why.  And suddenly you are back at a new specialist’s office for a new round of tests, or you are meeting with new therapists for evaluations.

The first time a doctor tells you that you don’t need to come back to them.  Specialists are just part of life when you have a child with special needs.  For us, it has been pediatric cardiologists, eye doctors, ear nose and throat doctors, gastrointestinal doctors, and bone doctors.  The first year is a relentless round of appointments, tests, and observations.  But one day, one of the doctors will smile at you and tell you that your child doesn’t need a follow up appointment, and that unless you notice something else that pops up in a few years, they don’t need to see either of you again.  And you leave the office with a bit more spring in your step, mentally checking off a little box in your head:  GI issues….DONE!  And that feels SO good.

The first time you realize that you have GOT this.  One day it will hit you that you really do have this whole thing figured out.  You are an expert in whatever special need your child has.  You can spew off the list of doctors, practices, therapies, and medications that your child is seeing, doing, and taking.  You know who to talk to at the state or county government office that will actually listen to you and try to help.  You know what an IEP is, and have faced down the school board at least once.  But that none of that really matters.  What really matters is that you have learned to put all of that stuff aside and just play with your child.  We can get lost in the red tape sometimes, but one day you will realize that the most important thing you can do for your child has nothing to do with which therapies they receive.  You will find yourself sitting on the floor, playing with trains or stuffed animals or stuffed animals riding on trains, and you will realize that THIS is what it means to be a parent.  Not a parent of a special needs child.  Just a parent.  Because that is what you are.  And you will grab your little one and hug them close (whether they like it or not), and tell them that you love them, that you will always love them, no matter what.  And they will look at you like you are crazy and that is ok.  Because that is what all kids do.

Crawling

Crawling

The Most Wonderful Time of the Year

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

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

Ho Ho Holy Shit this is funny

Ho Ho Holy Shit this is funny

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

2.  Silver Bells and Sensory Overload

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

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

IMG_3162e

Sorry, kid, not for you.

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

4.  Great Expectations

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

5.  Holiday Q&A

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

6.  Gifts Gifts Gifts

1-Corinthians-12-4

Its beginning to look like consumerism!

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

 

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

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