20 Things I've Learned Since My Son's Autism Diagnosis

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1. A lack of sleep makes everything seem worse than it actually is.

2. It is possible for one person to talk for four hours straight about snakes, or aquariums, or cats. Trust me.

3. People can be really, really mean.

4. People can be really, really kind.

5. Just when I think I can’t do another day, my son does something amazing and changes my entire perspective.

6. Sometimes doctors know exactly what we need. Sometimes they don’t. Either way, only go to a doctor that sees you as a valuable partner in your child’s health and progress.

7. My son’s abilities are far more impressive than I ever dreamed possible. I have been stunned more times than I can count. Like when I realized that he has, without even really trying, learned the scientific name for every single fish at the aquarium and every single plant at the gardens. It’s like glimpsing something sacred, something completely beyond me.

8. There is a reason for the behavior. There is always a reason for the behavior (and that reason has never once been to just annoy me).

9. Stimming is a thing. I had no idea.

10. Fixations serve a purpose. They are a valuable way for our children to connect with the world. And, our kids are often wicked smart because of them.

11. Most of my grief is my own, not my son’s. Letting go of all the expectations I have about being his mother is one of the most difficult parts of all of this. My son does not share these expectations – not even a little. So the problem most often is me. Not him.

12. Pick your battles. I will say it again. Pick. Your. Battles. I try to just work on one thing at a time, until it is a habit, and then move on to the next. Trying to do all the things at the same time does not help anyone, and just causes stress for every single person in our house.

13. Being a student of my child has helped me learn more than any book, therapist or website. Differences in brain function can be really hard to understand for the neuro-typical momma. The more I pay attention to how my son thinks and responds, the more I begin to understand.

14. Autism makes my life weird sometimes. For example, I found myself in an aquarium store every single day last week. Every single day, for at least an hour a visit. It feels like a bizarre way to spend our time, but this is us, living our life well.

15. You will figure out the unique things that work for your child. Lycra sheets work for mine. A quiet space, with lots of blankets in the closet, works for another little girl I know. You will find things that help, even when it feels like nothing can.

16. You will never feel like you are doing it completely right.

17. You will have days where it feels completely natural.

18. Other mommas are like a fresh drink of water. Find them, either in person or online. Ask them questions. Let them assure you that you are not the only one.

19. Prayer is always answered. Maybe not in the way I thought it would be, but prayer is always answered.

20. The way may feel when you first hear the word “autism” associated with your baby is awful. But I have learned that there is good and bad, beauty and ugliness, joy and messiness – all wrapped up in that one little word. If I have learned anything, it is to make peace with it. My son would not be my son without it. And I love my son. Exactly as he is – including the one little word that has completely changed our lives.

Autism.

I never thought it possible, but somehow, rather than fighting it, I have learned to welcome it. I have learned to know it.

And I have even learned to embrace it.

What would you add to this list?

boy sitting in doctor office

 

This post originally appeared on Not the Former Things.

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When My Dates Would Ask Why I Teach 'Those' Kids

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When I started dating again after my divorce, one question could ensure no second date.

Why do you teach those kids?

To be fair to the guys, it’s a legitimate question to ask when your date walks in with a limp and a giant bruise and explains that there was a substitute teaching assistant today who didn’t know we don’t sing the morning song and in trying to protect the substitute, she ended up with a limp and a bruise.

It wasn’t the question I had the problem with. I had a problem with the way it was asked. Those kids. You know the ones. The behavior ones. The ones with autism. The ones who get mad and hit because a person accidently messed up their morning routine. Why do you teach those kids? Said as if there was a problem with the kids and me in turn for teaching them.

I’d sigh. Sip my water. Wait for my friend to call and tell me that I had some vague emergency. I’d apologize and leave.

Once, I made it all the way to a sixth date with a guy when he announced that he wouldn’t let his wife teach those kids. At this point in the date, my car had a flat, my cat needed to go to the emergency vet and I think my grandmother was coming down with something. I really need to go check on her, sorry.

When I was done with dating in general, my teaching assistant said I should go on just one more date. Promise, she said. I have a really good feeling about this guy, she said. So after several days of texting, he asked me out.

“Why did you choose to teach those kids?” he asked, showing me a picture of his son. His son is disabled. He was not asking why those kids. He was asking me about why I made that choice.

So I said:

I get to hear kids labeled “nonverbal” speak words for the first time.

I’m there when they finally make eye contact and spontaneously request Goldfish.

I feel complete and total joy when one of my students says hi and interacts with another student in the hallway.

And the feeling you get when your student is finally, completely and totally potty-trained, well nothing tops that.

He smiled at me. And I smiled at him. We’ve been together ever since.

Fast forward a few years and I’d moved from an elementary autism unit to a secondary one. The kids were bigger than me. The kids were stronger than me. I did not know if I could teach those kids, and I was mad at myself for thinking it. I came home upset and crying after a particularly hard day.

He looked at me and said, “Why do you teach those kids?”

I answered, “Because if I don’t do it then someone else is doing it, and I cannot bear to think of someone who doesn’t love them as much as I do being with them.”

Then he said, “And if I told you to just quit, that we’ll be OK. What would you do?”

“Work with kids with disabilities,” I said. “I’ve never wanted to do anything else.”

“And so,” he said, “why do you teach those kids?”

“Because I love them,” I answered. “Because this was one bad day and one bad day does not a year make.”

He hugged me and said, “You better suck it up, Buttercup. Sounds to me like you’re the perfect person for those kids.”

I smiled.

Autism is always teaching me lessons about myself and life. We’re all worthy and sometimes we just need to find the person willing to talk us through the meltdown. 

I teach those kids because for them, I am their person. 

The author with her family

The Mighty wants to read more stories about dating, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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With Just 2 Words, My Son With Autism Let Me Know We’d Be OK

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I remember my son TJ was still 2.

He’d been diagnosed with autism a few months before this day. He only said “Ba” for ball, “Da” for dog and “Ma” for no.

He was immersed in so many different therapies and programs — most of them taking place in our home.

I remember I was tired.

My son Peter was 1. I remember how I wanted to go for walks, to playgroups, to Mommy and Me classes. But I couldn’t. Our entire day was scheduled around these therapies.

I remember I was playing with Peter in the living room. TJ was upstairs in his room with Diana, our first Discreet Trial teacher. It’s a one-on-one therapy away from distractions where the teachers use a reward system to teach things like emotions, colors, letters — everything. Parents were not to be present during their work. I listened through the baby monitor so I was in touch with what he was working on.

I remember being busy with Peter that day, and I wasn’t being my super stealthy listening self. We were playing and giggling when TJ and Diana came down the stairs.

“Mom, TJ has something to say to you…”

Wha… what? My heart stopped. Something to say?

“Hi, Mom,” TJ said simply, with a smile.

Even today when I remember this moment, I’m overcome. Overcome with pride, with surprise, with joy.

Overcome with hope.

Now my TJ is 15, and Peter is 13. TJ talks all day, every day. We have many more good days than bad, for which I am so thankful.

But every now and then, if I get a case of poor me or if we’re having a tough day, I remember those two little words that gave me so, so much hope:

“Hi, Mom.”

Happy Mother’s Day to all of you.  I hope your day is filled with love, with joy, with surprise.

And with hope.

laurenjordan

This post originally appeared on I Don’t Have a Job.

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The Job Offer Letter We Should Send All New Autism Parents

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Dear Liz,

Congratulations on your successful appointment to the position of “Autism Parent.” We understand you may be confused by this appointment, as you never actually applied for the post in the first place. You may also be concerned that there are no contact details in this letter, so you cannot write, call or email us to turn the position down. Your concerns are to be expected and will lessen over time.

However, we would like to make clear right away that being an autism parent is a mandatory post with a lifetime contract. There is no option to refuse the job, negotiate terms and conditions or take a career break. It is a financially unpaid post with no paid sick leave. You may be able to job share your role with a partner or family members. You must make any such arrangements yourself.

Qualifications

As this is a training post, the only essential qualification required is to be parent of a child with autism.

Essential personal qualities and experience

None. Autism parents are not special people. You may look at your fellow autism parent colleagues and think, “Wow, they are amazing.” It is important to remember that they, like you, do not have the option to suddenly stop being an autism parent. They persevere, they laugh, they cry and they celebrate. They do the job because they have to. They become “special” because of the extensive on-the-job training they receive as part of being an autism parent (see below).

Desirable personal qualities

  • Ability to manage daily functioning on less than four hours of sleep
  • A taste for caffeine in all its wonderful forms

Training you will receive before taking up the post

None

On-the-job training

  • Managing sleep deprivation
  • Advocating for your child
  • Appreciating and celebrating small steps
  • Networking within a multidisciplinary team
  • Arguing constructively with professionals
  • Doctorate in acronyms (health and education)
  • Learning who your true friends are
  • Promoting awareness about autism
  • Learning about sensory differences
  • Extensive knowledge about how to complete various forms (e.g. benefits, schools, health packages, respite services and local authority forms)
  • Disinfecting
  • Cookery level 1 (fries, nuggets and associated sensory-neutral foodstuffs)
  • Doctorate in communication with your child. Optional topics include scripting, vocal stimming in context and the many meanings of a hand-flap
  • Ph.D. in loving and accepting your child for the wonderful individual he or she is
  • Fighting like a bear to protect your child and his or her interests
  • Coffee appreciation

Incentives and employee benefits

The more work you put in, the better the life chances will be for your child. There is no greater incentive than this.

We understand there is a lot to take in, and that it would be useful to have a short introductory period in order to familiarize yourself with the role and its challenges. Unfortunately, due to the fact that you’ve been doing this job without realizing it since the day your child was born, there will be no further induction to the role.

“Autism Parent” is an amazing job. It will challenge you and help you to grow in ways you cannot imagine right now. It will make you laugh and cry. It will involve making tough decisions, taking risks and climbing mountains. It will bring you new friendships. It will give you a unique bond and special relationship with your child.

We are pleased to have you as part of our team. Supportive forums to discuss your role and your progress in it can be found on Facebook, Pinterest, various blog sites and other social media outlets.

Yours sincerely,

Human Resources Manager
Autismland

A child looking at a fish tank.

This post originally appeared on Cat on a Trampoline.

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Autism Is Not the Common Cold

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“Autism is not the common cold,” I said to a group of family members gathered around a cozy living room after a delicious meal. I had never thought about it that way before, but the phrase has been rolling around in my head for the last several weeks.

We had not seen my husband’s brother and girlfriend in several months and they inquired about my son, Jeremiah, and his progress, and I, in typical fashion, I had a lot to say. I can’t remember the specifics now, but I shared his interests and his victories and how he amazes me every day. How I can’t believe how much he’s grown since his diagnosis three years ago.

Here’s the thing that got me thinking: we discussed Jeremiah’s potential in his future, and how far the doctors and I thought he could go.

My answer? I walk the line of hope and reality.

I know that, based on where J is “at” developmentally at age (almost) 7, I should assume an alternative diploma track and vocational training will be the most appropriate path for him.

And then again, I think: HE’S NOT EVEN 7. Let today be today, and appreciate its gifts.

Autism is not linear, and neither is the growth of the individuals affected by it. Like many on this path, we enter in thinking we can boil it down to a formula. Take these prescribed therapies and those preferred intervention strategies and voila, off the spectrum! Even for the most “high functioning” individuals on the spectrum, who “pass” as typically developing in society, it’s just not that simple.

And as a mama, I want to make it easy to understand for those involved in our lives. Spin our own narrative. “We are kicking autism’s butt and taking names!” Rah, rah, rah!

But it’s just not that simple. And I’m starting to appreciate it.

We started at point A: diagnosis. We went to point B: early intervention. We arrived at C: pulling out of B and homeschooling to focus on relationship building. We moved to D: re-entry of traditional school to enter a self-contained autism class, which we would have never entertained and dreaded just a few years ago.

Now, point E: informed advocacy. After a year of re-entry, we find ourselves at the end of an academic year and are taking stock. J has benefited from the routine of the classroom and the multiple interactions with teachers and adults. His teacher is a dream, an angel among us.

But we don’t stop trying, reaching, searching for what’s the very best for our son and how that affects the whole family. I’m actually walking into an IEP meeting next week informed and prepared. I have sat down and carefully analyzed my concerns and shared them with the team. I have requested several stakeholders present at the meeting. Not because I’m displeased or hostile. Not at all. That was a risk for me. Everyone has been so accommodating that I didn’t want to rock the boat or raise a stink. Hello, I’m a peacemaker. And a woman. And a southern one at that.

But it’s my right and my duty. I’m my child’s best advocate, and I want to make him his best advocate as he grows.

Our little family was out to dinner a few weeks ago, and I was sharing with my husband about all that I had been researching and learning about IEPs and educational opportunities in the future for J. I patted myself on the back for taking small steps of bravery: making calls, asking questions. I expressed fear over those things not being well-received. I worried about challenging the status quo.

My husband’s answer? The reply that made me tell him, “And THAT’S why I married you. That right there”?

“That’s what we do. We. Us. Our family.”

We do whatever it takes for our children. Whatever we can do. We do it.

We are, as the great character Atticus Finch told his daughter Scout, common folk. We follow the rules, tow the line. We are educated, but not pedigreed. We are not “special” and do not view our children as “precious snowflakes” who are better than any other child.

It’s not what we have. It’s who we are.

These children are ours, and as such, we will do everything in our power to secure for them the most appropriate and beneficial methods to aid in their development.

We don’t know exactly what that looks like, but we are committed to searching it out.

Even as we know there is no one answer, no magic pill.

The searching, the banding together, the being-a-family is.

Autism is not the common cold. It is not linear. Nothing is.

And that, despite the hard times, is the beauty of it all.

mother and her three children outside

A version of this post originally appeared on The Jaybird Blog.

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15 Daddyhood ‘Truths’ That Turned Out to Be Lies

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Parenthood, at least for me, has been a series of stumbles and progressions. Some calculated, some not, but all of them a lesson in perseverance and humility. Perhaps the most humbling moment I’ve experienced yet as a parent was the day I realized I wasn’t going to be the dad I’d hoped I would be.

Not even close.

This had little to do with me being a special needs parent and everything to do with me being an honest one. Actually, let me rephrase that… it had everything to do with me being a realistic one. That’s not to say I’m inherently a liar or wildly delusional or something; it’s just that I, like many new parents, chose to believe in the best version of myself right out of the gate. Which, while admirable, isn’t always attainable and only served to show me the parent I thought I should be and not the parent I knew I should be. There’s a fundamental difference there that needed to be addressed. So, as I often do when I need to work things out on my own, I made a list (one of my more spectrummy guilty pleasures). It’s a list of parenting truths that, while not revolutionary, will hopefully provide me (and maybe even you) with some perspective as I continue down the road of daddyhood.

*To give credit where it’s due, this list was actually inspired by another daddy blogger, Jerry Turning, over at Bacon and Juice Boxes (his blog is fantastic, by the way). His list was short, sweet and wonderfully honest. I only hope mine will be half as compelling.

Lie: The world will reveal itself as a nasty, dangerous place full of ugly things and people, and I will protect you from it all.

Truth: You’ll learn the world is not that scary. I promise to protect you from the worst it has to offer, but you will experience adversity, and I’ll do my best to help you get through it.

Lie: I’ll make sure you never get bullied or taken advantage of.

Truth: You’ll probably get bullied. At least once. Maybe more. It’ll suck. But I will be there to comfort you and dry your tears. Then I will promptly address the matter.

Lie: I will make sure you grow up in a world of tolerance, understanding and acceptance.

Truth: You’re wired differently. Not everyone is going to accept that, let alone understand it. I won’t force them to. But I also won’t let you be ashamed of it. Ever.

Lie: I’ll hold your hand every step of the way and will always be there to catch you when you fall.

Truth: My hands will be full from time to time… maybe with your brother, maybe with your mom, maybe with groceries and maybe with life. But I promise to hold yours as much as I possibly can. Likewise, there will be times when you fall and I won’t be there to catch you. You will be mad at me, maybe you’ll even resent me, but if I don’t ever let you fall, you will never learn how to get up.

Lie: I will always say the right things.

Truth: I’m not a robot, your mother or the Internet. I will say a lot of wrong things over the course of your life. But I will always try my best to correct them and learn from them.

Lie: You can do no wrong in my eyes.

Truth: You’ll do some wrong in my eyes, maybe even a lot, but it will be my job to help you learn from it. Even if it takes a couple of tries.

Lie: I will support every ambition, aspiration and dream you have in life.

Screen Shot 2015-05-05 at 5.09.02 PM Truth: Maybe your dream is to build a jail cell for your brother. I won’t support that. But I will always be your biggest fan. Always.

Lie: You must be so lucky to have a dad who does ABA therapy for a living.

Truth: Those are clients. That’s my job. I do that for a living. You are my son. I am a parent. I do that for life. The line between behaviorist and dad is constantly blurred, and while I’m still learning to wear both hats, I will always be your dad first. Always.

Lie: I won’t spoil, coddle, indulge or enable you in any way. You’ll grow up without a sense of entitlement and learn the value of independence.

Truth: I will do all of those things. Occasionally. OK, often. Not because I don’t value your independence but because I am your dad, and that is one my many inherent flaws. I can live with that.

Lie: I will never lie to you.

Truth: I will lie to you from time to time. Most of the time, it will be for your own good or to protect you. Sometimes, it will be because I really can’t deal with another 20 minute meltdown over that Spider-Man puzzle you insist on doing but can never figure out, so it is now “lost” until further notice.

Lie: I won’t keep everything you ever create or bring home from school. That’s f*cking crazy.

Truth: I’ll keep it all. I am a hoarder. Again, I blame my mom.

Lie: I will always set the best example for you and be the most important role model in your life.

Truth: I sometimes forget to brush my teeth at night, I’m pretty sure I eat my body weight in candy each year, I say the word “f*ck” often… and audibly, I drink beer and wine with your mother on a regular basis, I have my head in my phone more often than I’d care to admit, I yell at other drivers in the car, I occasionally forget to return phone calls and text messages, and I don’t delete watched shows on my DVR until it’s too damn late. So um… yeah. I won’t always be the best example, but I will always try. It won’t be perfect, but then again, I don’t expect you to be either.

Lie: When it comes to dads, I’d like to think I’m a cross between Danny Tanner and Philip Banks.

Truth: Wait, did I say Danny Tanner and Philip Banks? I meant Phil Dunphy and Michael Bluth. Yeah, that makes more sense.

Lie: I will always be there for you.

Truth: I won’t be there one day, but when that day comes, I hope I will have given you all the tools, wisdom and resolve necessary for you to live the happy and meaningful life I know you deserve.

Lie: I can never love you more than I do at this very moment.

Truth: I can.

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