When normal ain’t normal…

Is it just me, or has their been an abundance of news stories as of late relating to individuals with Down syndrome? These stories are getting a lot of attention in social media circles…but for (what I think) is the wrong reason.
Today we had this piece floating around…garnering a lot of “LIKES”:

Meet Madeline Stuart

My first reaction upon seeing this headline was “Great!”.

Then I got to the part where the mom says she wants people with Down syndrome to be seen as “sexy”, I cringed a little. I think it’s great to represent and mainstream individuals with Down Syndrome. Increased media exposure helps our society adjust to seeing these people as just normal folks. Seeing these same individuals as sexy bugs me a bit because of consent. I call my daughters “beautiful”, but not “sexy”. It becomes creepy like a pageant mom to me at that point. Just me.

I do think she’s a beautiful girl, I love her confidence and fearlessness. I hope she gets tons of wholesome, catalog work.

Many individuals with Down syndrome are vulnerable throughout their lives. To see them as “sexy” is just a whole new way to objectify them and perhaps victimize them.

Another piece making the rounds the last few weeks was this seemingly sweet headline:

Pennsylvania QB take friend with Down syndrome to prom

What kind of monster wouldn’t find this story endearing and sweet? Well, me. A little.

What this boy did is nice. It’s not heroic. It’s not so out of the realm of “normal” behavior that it warrants national attention, is it? I’m irked that being a decent human being has become exceptionalism in our society. This girl didn’t have ebola. He knew her since childhood. This story reminds me a bit of this “news” item that went around last year before the holidays about the cop who gave a homeless man a pair of boots. How heartwarming. A policeman does something kind. Shocking!

That ain’t news folks. That’s what should be expected. Kindness. Humanity. Helping others. Thinking of the needs of others.

When each person with Down syndrome goes to prom, or graduates high school, makes the swim team, or does something completely normal and it’s national news, we are missing this point of acceptance and inclusion. Sure, these are great moments in anyone’s life, and yes, I know how hard this little girl worked to make the cheerleading squad (as did all of her older sisters), but when we put them on a pedestal and award them with (albeit fleeting) fame, we make it seem miraculous that they were able to accomplish this.

Now try to convince people that your child with Down syndrome is really just like everyone else.

Didn’t your prom photo get 27 million likes?

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3/21 World Down Syndrome Day

Down syndrome. You can spot “them” from across a gymnasium. Their eyes are different…they have a flat nose bridge. They have some kind of learning disability.

And that, dear friend, is all I knew about Down syndrome 8 years ago. And then an individual who happens to have Down syndrome came into my world. It temporarily upheaved my life. Now it’s my norm, and I wouldn’t change a thing. This individual with Down syndrome has made a profound impact upon my life.

But before I describe this impact, I’d like to tell you some other things I now know about Down syndrome. I hope you’ll read this and understand.

March 21, or “3/21” was chosen as World Down Syndrome Day because of the significance of the numbers in that date.  

Most humans have 23 pairs of chromosomes within the nucleus of each cell in their bodies. The genes within these chromosomes give each of us our uniques traits. Individuals with Down syndrome have a little something extra on the 21st set of chromosomes. Instead of this set being a pair, for some random reason, they have triplets here: 3 chromosomes on the 21st set. This is what makes Down syndrome (also called “Trisomy 21”). It happens naturally in humans, in about 1 out of every 700 births. It’s rarely hereditary (less than 1%). The chance of having a baby with Down syndrome increases with maternal age. However, most babies with Down syndrome are born to young mothers…(no doubt since young mothers make the most babies). There is no “cause”. It’s just because.

To clarify: it is not caused by sin, incest, booze, marijuana, or LSD, or any of the other depressingly ignorant notions I’ve seen posted online. It just happens in nature. Like 4-leafed clovers, cleft palletes,  or left-handedness.

So 3/21 was chosen for the 3 and the 21. Now you know! And that makes it easy to remember the date, AND remember some cool sciencey-stuff about human genetic material.

There are about 400,000 people with Down syndrome living in America right now. People with Down syndrome are recognizable. They have unusual almond-shaped and lidded eyes. They are shorter than the average person. Because the previously mentioned chromosomal disorder can affect the thyroid, they may be subject to being overweight.

About half of individuals with Down syndrome are born with a heart defect. Some may require surgery to correct that defect at some point in their lives. Many wear glasses because of eye problems. Hearing can also be an issue. They have elevated incidences of leukemia and Alzheimer’s within their population.

Down syndrome is discovered by either prenatal testing or at birth. About 90% of those diagnosed prenatally are aborted.

In 1910, children with Down syndrome lived to about the age of 9. Today, 80% of adults with Down syndrome reach age 60, and many live much longer. Individuals with Down syndrome are not always happy, nor do they all like to hug or be hugged. They are individuals, just like you and I.

At the risk of stereotyping, there are some traits aside from general appearance that many parents and friends of people will tell you they all share: They love music. They want to fit in and have friends. They can learn to read. They like to make you laugh. They love to laugh. They find what it is they like or enjoy, and stick with it. They are passionate about things. They are stubborn. They are strong-willed. They know what is important in life. They can teach you things you never thought you needed to know.

So for World Down Syndrome Day, I’d just like to say thank you, to my youngest daughter, Presley, who brought Down syndrome front-and-center into my life. And thank you to my husband, Rob, who has taken this journey with me, and been the voice of calm and reason whenever I’ve need it.

Presley having Down syndrome was a surprise. Prenatal testing showed my risk (Eek!), then additional testing ruled it out (Whew!). Then when she was born, Surprise! “Wait…what? This can’t be! They said she didn’t have it!” …And I was shocked and sad and scared, because remember, at that time, I only knew:

Down syndrome. You can spot “them” from across a gymnasium. Their eyes are different…they have a flat nose bridge. They have some kind of learning disability.

But here she was, and I didn’t see “Down syndrome”, I saw this perfect little baby. A baby who had some immediate health concerns and needed the miracle of modern medicine, and a baby who needed me to be there for her. And I had to rise to that challenge. I had to learn what I could about Down syndrome.

Now feel I have to tell other people about Down syndrome so that others understand and “get it”, and don’t fear her or underestimate or discriminate against her. I want her to be accepted and treated like anyone else.

I have to be her advocate. I want people to know Down syndrome is not scary or contagious. You can talk to people with Down syndrome; not at them or over them. You can treat them as you would anyone else.

We have very high expectations for Presley. We want her life to be as normal and average as possible! Individuals with Down syndrome can live independent lives with the right support and assistance. They go to school (yes, college even!), work, and contribute to society. Their cognitive delays are mild to moderate, and educators are working every day to unlock their full potential.

My youngest daughter is just a regular kid. She has challenges. Some things take her longer to master. Those baby milestones came and she passed them all…just sometimes years later than mainstream kids. But she did it. She had to work extra hard; harder than mainstream kids to master her goals.

Did you know that a survey of people with Down syndrome found that 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked? Isn’t that awesome? What the heck is wrong with the rest of us?!

So I understandably laugh a little when I see a news report that refers to someone as “suffering from Down syndrome.” I really don’t think that’s possible. They seem to like themselves and their lives.

Another survey of parents of children with Down syndrome indicated that 99% loved their son or daughter; 97% were proud of them; and 79% felt their outlook on life was more positive because of them.

Today is a great day to learn a little something about Down syndrome…as if I need an excuse to talk about it. It’s changed my life, and truly for the better. I’m still a flawed human, but I have a greater understanding about priorities, love, patience, kindness, equality, and happiness.

Please help me by giving respect to the lives of  those with Down syndrome. Their lives matter. Through respect and understanding, individuals with Down syndrome can have a positive affect on the world, as they do upon the lives they touch: They don’t weaken society. They bring out the best in society.

As Presley would say, “Peace, out.”

 

If you’re pregnant with a child with Down syndrome, I encourage you to keep reading and learn all that you can from many sources. You owe it to yourself to make an informed and educated decision about your baby. You’ll hopefully know more about it than I did when Presley was born. You won’t regret it, I promise.


http://www.ncbi.nlm.nih.gov/pubmed/21910244

http://www.ncbi.nlm.nih.gov/pubmed/21915989
 *There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   - See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.oupSI7O0.dpuf

When other parents scare me

I try, oh do I try, to never ever judge other parents. But parents, we need to talk. Some of the things you post on social media really make me cringe. Some of the things you post make me feel very sorry for your children.

And I’m trying not to judge.

I’m a member of a few online parenting groups (which are probably 99% moms, with dads rarely represented.) Some groups are very general, open-to-all type groups, some are based upon our proximity, some are based upon our child’s likes or special needs…it pretty much covers the gamut.

For the most part, I like the tips and hacks (though I hate that word; “hacks”), the photos of your child reaching a milestone, the pertinent news items, the jokes and anecdotal stories. I am a pretty frequent commenter; happy to share my ideas or experiences that will hopefully help someone else.

goingbald
Stress? Genetics? A velcro pillow case? A thyroid condition? Normal baby-hair shedding? I give up. …and in the case of parenting, it would seem you have as well.

But there’s a few of you moms out there who mistakenly believe that an internet forum is a safe group of close-knit friends where you can really let all the intimate details of your life fly, oh, and you are also convinced we are a medical community of highly skilled doctors and medical practitioners, who can make a sound medical diagnosis based upon your loose description and a blurry photo you snapped with your iPhone.

Horrifyingly, I saw a post from a mom who asked the group what to do because her baby “is panting and has a fever of 104°”.  Very quickly, loads of comments told her to step away from the computer and get to an ER. The post was removed a short time later by an admin, no doubt because some shocked women really tore into that mom.

dentist
Let me get this straight, you are inquiring if we fellow parents, agree that you should CONTINUE to neglect and postpone dental care for your child? Does it matter what we say?

I mean, I HOPED better for us, as women. It’s one thing to have a horribly “off” day..it’s quite another thing to post it on the Internet and look for support. Women, are we listening to ourselves?

I know it’s wrong to look down on the mom who is wearing fleece Paul Frank pajama pants when she drops her kid off at school. I wouldn’t judge that. That lucky mom maybe gets to work from home. Maybe she’s caring for a sick family member. I don’t know, and it’s none of my business. And only a dick would judge a person who is using food stamps or WIC. Also none of my business. Going to a strange church? Nope. Don’t care. Vote Republican? Vote Democrat? Nope. None of these things would ever make me judge you or not want to be your friend if you are a decent person.

I have been to General Practitioners who've sent me to a Dermatologist for rashes that didn't look this bad. Yet with no tests and no medical history, this virtual room full of liberal arts dropouts are going to nail this diagnosis.
I have been to General Practitioners who’ve sent me to a Dermatologist for rashes that didn’t look this bad. Yet with no tests and no medical history, this virtual room full of liberal arts dropouts are going to nail this diagnosis.

But…there is a line.

When I feel concern for your kid, that’s the line. When you share that your child is suffering, and the only effort you can muster to help them is to post their photo and broadcast their suffering,  I feel for your child. Do you really want to help them, or are you doing it for the attention? For the “likes”? Are these social media parenting groups are just a secret convention for Munchausen syndrome?

Please. Please. In the name of all that is holy, if your child has a medical condition that concerns you (upset tummy, snotty nose, itchy rash), call your local clinic. Ask to speak to a nurse. This trained and experienced medical worker will let you know if a doctor should take a look. If it’s more serious and the child is having a fever, a headache, a large area rash, neck pain, diarrhea and/or vomiting, put them in the car and get to the doctor.

Social media parent groups are great for sharing tips, funny photos, news…even a story about your trip to the doctor…but please, don’t use them for obtaining a medical diagnosis if something has you worried. Be a good proactive parent, lest ye be judged.

Working on now…

kellanI’m currently working to illustrate a book for an author from North Dakota. This is her second book, and both were written for her grandchildren. I’ll share the link when it’s finished…probably in about 6 weeks.
It’s so much work to illustrate a book!

I love doing it, but some nights it’s just hard to come home and be creative after working a full day as a creative designer…but it’s something I really love to do. Hopefully one day I can illustrate full time. For now I just do it for the love…because it certainly doesn’t pay the bills.

In my sketchbook…

So I’m a doodler. I love to have a black marker pen or crayon in my hands. I do it throughout meetings when there’s rarely “real” notes to take. I do it while I’m on a conference call (any phone call, honestly). I do it while I’m watching the hockey game. I do it while my youngest daughter colors along side me.

This is a small progression with a pretty funny, (albeit somewhat creepy-looking), end to it…

A poor pen drawing of the little girl, here in bunny slippers by a sunny window.
A poor pen drawing of the little girl, here in bunny slippers by a sunny window.

So I have this very rough idea in mind for a children’s book. (Very rough…like just developing some fun characters I want to know, and hoping a story pops up). The first character in my story is a little girl. She’s 9 or 10. She’s cute but plain. Lonely. And just found that her mother left a very disappointing note on the kitchen table. I generally just start drawing without really paying close attention, until I come up with something I like, then I develop and go from there.

An OK first attempt, but I thought she was way too tall. I should maybe make her stouter, more cutesy.

Much cuter, but this nightgown looks like she should be a waitress at a truck stop.
Much cuter, but this nightgown looks like she should be a waitress at a truck stop.

Maybe she needs to be a little more plain.

Not going to the right direction here either...
Not going to the right direction here either…

Nope. Too plain. Too young now.

She should perhaps look a little more despondent.

Did you just have a good cry, little girl?
Did you just have a good cry, little girl?

Nah. Try…Irked?

I also came up with a better name than Zou Zou...maybe.
I also came up with a better name than Zou Zou…maybe.

She just looks miffed.

Hmm. The brows could be interesting. Expressive. That's easy.
Hmm. The brows could be interesting. Expressive. That’s easy.

So does she.

A couple of attempts...the window is back for practice...but neither of these are the little girl that can pull off this story...she has to be stronger maybe.
A couple of attempts…the window is back for practice…but neither of these are the little girl that can pull off this story…she has to be stronger maybe.

Maybe make her a little Darker. No, maybe Dressier.

Better dresser. ooh. Do better eyes.

Sleepier eyes.
Sleepier eyes.

…and let’s consider her sidekick I have in mind. A little goat guy named Botis.

Here comes trouble.
Here comes trouble.

A Cocky Botis…

botis2

…and here’s one of the little girl that I started, and then Presley took my pen and worked on her while I stepped out of the room.

Exhibit A: Kids always get into your stuff. It's why you can't have nice things.
Exhibit A: Kids always get into your stuff. It’s why you can’t have nice things.

Darker! Angrier! Yes! Make this story something parents might tell other parents about. Darker…

darkerEmbrace the dark!

scary

Well now she just looks like a child who would hurt a pet.

What about something looser…just in silhouette….

That note her mom left is really having an effect on her mood...
That note her mom left is really having an effect on her mood…

Okay. That’s creepy. But kind of fun. Add in Botis, the window..you know…

Presley strikes again with the marker. "I love mama".
Presley strikes again with the marker. “I love mama”.

Gah! Time to work on a different project…

 

 

Self-publishing with Amazon

I am frequently asked about how I publish my books…specifically, who is my publisher. I’ve used Amazon’s Createspace for everything. My experience with it has been great. Would I like to sell more books? Sure, but apart from my facebook page and some half-hearted blogging, I rarely do much to self-promote. I think this is one component of self-publishing that many people aren’t prepared for. I think some people believe if you just throw something online it will sell. I can tell you from my experience, this is not true at all.

My book, “What I Want You To Know” was written specifically for new or expecting parents of a child with Down syndrome. I set up a kickstarter.com project to raise some money. When the book was complete, I used the funds to purchase a sizable number of copies, and pay the postage to send them out to loads of Down syndrome advocacy groups, clinics, and organizations about North America. I went on television a few times. I was reviewed by small magazines and a couple newspapers. I did public readings and book store signings. I created tiny ripples in the small pond of people who might actually be interested in my book.

This was really the only time I promoted a book I’d made. The rest just sit on an Amazon server somewhere, waiting for their number to be called.

Createspace publishing is all done POD, or “print on demand”. When someone orders a book of mine, the magic elves in South Carolina print and bind a copy, and ship off the order within about 24 hours. As someone who’s worked in publishing for 15 years, this is a beautiful technological feat. Here’s why it’s awesome: I don’t have to come up with $10k in advance and print a thousand copies I then haul around in my trunk for 3 years. I don’t have to invest a dime, and I don’t have to deal with inventory and shipping out orders. If I want copies for myself, I can buy them for a significantly reduced price per copy.

They let me pick the price. They direct deposit (30-day lag) all royalties each month. They give you virtual store you can create discount codes you can pass along to “fans”, allowing them to buy copies for cost or near-cost.

My books are also available throughout Europe.

What people gripe about mostly are the hardships of being an island. There’s no publisher to set-up a book tour for you. You have to navigate and figure this out yourself, and then be savvy enough to work it. Your book isn’t going to magically appear on New York’s bestseller lists, like I guess some people expect. Your book isn’t going to at Barnes & Noble because you call it your “new release”. Barnes & Noble and other (primarily) brick & mortar stores stick to what those major book publishers tell them too. I’ve found the only way to get into a brick & mortar store is to go there and meet the owner or manager. Give them physical copies of your book. Kind of a huge disadvantage for us unsigned authors. It really limits your distribution.  It’s like a band making their own CDs and selling them shows, as opposed to the major label artists’ CDs showing up at every retail store in the country. Then again, you obviously weren’t “discovered” and assigned an agent yet, which is why you’re considering this route to getting published in the first place.

If you’re someone who’s written their life’s novel, and you’re looking to making it available to the masses, you’ll also have to consider setting up the files and designing a cover. This can’t be underestimated, and I say if you’re going to even remotely have a shot at a book that sells, you need to spend some money. Find a good designer. Ask around. Don’t settle. Be fair on your price. Designers are generally a “get what you pay for” occupation. Give $50 to your best friend’s 16-year old daughter and I can almost guarantee it will suck. Look at other book covers in your genre. Let them inspire you. You really can often judge a book by it’s cover.

Also, Comic Sans will likely make your children’s book fail and 12-point Times New Roman will probably destroy the quality of your brilliant murder/mystery. Why? because they look unprofessional and low-brow to anyone with an eye for these things.

You’ll want friends to proofread it once you get a hard copy proof. Proofread the thing, set it down for a day or two, then proof again. I suggest asking friends (who are readers) to help you with this. Often times when we’re really involved in a project, a huge glaring error can get through because we have just looked at the project so many times, we quit “seeing” it after awhile.

Back to createspace.com. It’s really straight-forward to use. It walks you through every element. It will give you a free UPC code, which will also save you money. The caveat to this is that you can’t say “Published by Jim Smith Publishing, Akron, Michigan”. You have the option to pay to purchase the “imprint”, which is publishing talk for the little microtype copyright/publisher info that appears in the front pages of all books. That said, it might not matter much. Regardless if you purchase the imprint or not, you are the author/publisher, and retain all rights to the book. So say your amazing book is discovered by a huge publishing house who wants to republish/rework the rights, you can do that. You are under no obligation to keep your book available to Amazon. You still own it.

Since my books are all heavily illustrated, making them available on kindle doesn’t make sense, but it’s a free option here too. Again, don’t imagine you’ll be SEO, unless your topic is very specific and limited. Use tags. Write your author bio. Don’t skimp on the book synopsis.

There are several other POD book publishers these days. Initially I investigated a few, and found the info available on the message boards and through Amazon/createspace the most clear-cut and helpful. I’m sure you can discover their names with a quick google search of POD publishers, but since I’ve never used any others, I’d hate to steer you towards them. I found createspace first and have been very happy with the whole process. The final product is of high quality; I personally have never heard of issues with the quality of the book binding, paper, or printing. Since it’s 100% guaranteed, should any misprints occur, they will redo or refund.

It’s low risk, and low/no cost. I’d recommend it to anyone who wants to get their work published but has never been able to afford it.

If anyone has had a different sort of experience, I’d like to hear your story as well.

The Secrets of Raising A Child with Down Syndrome

10acd39f10f35b1c29170d4I surely don’t cast myself as speaking for all parents of child with Down syndrome or any other disability. But there’s some things about raising them that maybe not everyone knows.

It’s so much more expensive, it’s absurd.
When we dreamed about our new child, we never thought for a second that we would be changing diapers for 6 years. Most “mainstream” children in America are housebroken by age 3. Some much earlier, before their second birthday. So that $200 a month on diapers is no longer a financial burden for most. You’re tagged with it for another 4 years. Do the math please, I’m horrible at it.
Also consider the additional laundry, caused by the near-daily “accidents” that happen while at school or overnight.

Think you can throw your kid in any after-school program or the before-school daycare? Not so fast. Your kid requires a 1-on-1 attendant. That is gonna cost you. Finding an opening for a child who is “different” takes more than running down the list a google search yields. It takes calling people you know who can recommend a place, or person. If your child is non-verbal, (i.e., can’t tell you if someone is behaving badly), you can bet that you will want to pay for quality care when you can’t be home. Or…you can really be nuts, like we are, realize it’s easier to have a parent at home. My husband and I have alternated throughout the years. Truth is though, someone gets their career derailed for a while. The family income is reduced, and you are maybe just gettin’ by at times. Or worse.

Don’t even get me started on medical co-pays. (Oh wait, there’s government programs to help with those? See my next point “The extra time it takes.”) The additional medical bills probably vary greatly from family to family, but can devastate you. Once you fall behind, things have a way of snowballing pretty quick.

Through a community program, our daughter received a beautiful brand new bike last year. It’s adaptive, meaning the pedals, handlebars, seat, etc, are all set-up in such a way to make it easiest for her to master. Wonderful program. (Spin For Kids, in Grand Forks, North Dakota) The bike, cost nearly $900. I cringe a little when I see a flyer for Target with a “mainstream” kids’ bike for under $100.
And yet we are lucky. Our daughter’s additional therapeutic and medical expenses for devices are nothing compared to other families whose precious children face even greater challenges in life.

The extra time it takes
Hope you’re patient. All parents say/think this, right? Ohtheyhavenoidea. Want to plan a special activity? Better start telling them about it a couple days in advance. Our daughter loves to look at the calendar or a visual schedule. That’s because transitioning, (going from one activity to the next) is difficult. I repeat myself so often and have for so many years, I feel challenged carrying on conversations with other adults sometimes. I probably say the same instruction a minimum of 3 different ways to try to find one that resonates. I feign enthusiasm. I exaggerate urgency. I exude anticipation. I scream in my car.

Ever heard of an “I.E.P.”? If not, consider yourself lucky. I.E.P. stands for “Individualized Educational Plan”. Plan on taking time off work to attend these in addition to regular conferences at school. First of all, let me say that I think I.E.P.s are a good thing. No, a great thing.
People who went to school, have had experience, and often times a passion for helping kids with special needs have watched your child, listened to you, and have put together a plan of how to address the special individual challenges, and cause positive change. Many times I’ve been relieved that other people see the same things in her that I do, and saddened by the realization that needing this plan is necessary. You’ll sit in meetings with specialists, therapists, teachers, principals, advocates, social workers, paras, and learn a lot. Hopefully laugh a little. (Or a lot, if you retain your sense of humor). You will sign your name a hundred times. You were there. You know the plan. You are okay with using this plan. As a parent, you should know your rights, and stand-up if you see any shortcomings. We learned this firsthand while living in Montana, in a city that has policies to this day that violate the Americans with Disabilities Act. We fought, and won for our child, but nothing changed system-wide for any other kids.

More time is spent try to take advantage of programs that are supposed to help your situation; the county or state programs vary widely depending on where you live. The only common denominator I’ve found is that filling out the bullshit paperwork and interviewing and talking on the phone is a full time job for about 2 to 5 months each year. I’m not even exaggerating, based on our experience. You can’t go to your job and sit on the phone with human services for an hour and a half while you’re on the clock. Also, you’ll spend many evenings completing the paperwork. Oh, and hunting down social security numbers and birth certificates and past I.E.P.s and medical records and bills, and paycheck stubs, and tax returns, and list of contacts, references, and medical practitioners. Some of these will need a notary. Or certification of some sort. Have fun.

Finding a place to play, a playgroup, a family activity, all take longer because your options may be limited. We can’t take our daughter to a movie, for example, because it would not be something she’d tolerate. She can’t sit still for 2 hours, and the light/sound stimulation would prove overwhelming. We tried. It doesn’t work. It’s too expensive to keep trying, so we’ll wait until she shows us she’s ready in other ways. I’m totally okay with that! We’ll just have to stick to the things that do work for her. We’ll go to the pool clear across town. Or the playground 2 towns over. We’ll spend extra time finding whatever works for us.

You are thrown into the role of rabid advocate.
Suddenly you want to scream at people who want to cut special education funding. You are overjoyed and tell people whenever you hear about a spectacular feat by a person with disabilities in the news. You join facebook groups with other parents in the same, special club. You resist the urge to punch mouths that say something is “retarded”.

You’ll tell anyone who will listen about all the ways your child is the same. You’ll argue to lessen the differences.

You might lose friends over this. Balance, my friend.

The Milestones come so hard.
Walking, a year long wait. Riding a bike, 3 year wait. Using a toilet, a 4 year wait.
All those insignificant things that happen to “mainstream” kids at an appointed time become I.E.P. goals and therapy exercises for you. And yes, it is even sweeter and soul-affecting for us.

You’re not a superhero. You are just a person. A person who faces extra challenges. Your challenges pale in comparison to your child’s. Maybe you’re not supposed to be hung up on teaching them things. Maybe you should focus on learning things.