Up all night

Ally didn’t sleep last night and was wide awake for nearly 24 hours straight.

This has never happened.

Ever.

We started Zoloft four days ago, 10mg at night. She has been kind, alert, and happy since. But is insomnia going to be a thing now?

After four tries at putting her in her room, in bed like we do every night, she was still wide awake.

My husband laid with her, Alexa read her stories, I gave her a bath, let her sleep on the floor next to my bed and by 4 am, she was still awake. I sent her back to her room.

She was quiet for a couple of hours between 5:30 and 8 am, and I hope she fell asleep but I am not 100% sure.

Now she is bouncing off the walls.

All night she couldn’t stop talking. Asking questions.
What did George Washington wear to his wedding? Why are there planets?
What does Mars smell like?
Alexa, how many blades of grass are there in the universe?

This has never happened with her.

Ever.

Autism Awareness Day, 2020, During COVID-19 Quarantine

As we approach Ally’s 6th birthday this Spring, we also approach 3 years since her official diagnoses.

It was a June morning and we spent hours in a room with her Developmental Pediatrician. She was the third specialist on our journey, our third opinion. And while all three doctors along the way didn’t say that she had Autism (because she was a girl and she talked, yes, even doctors could be that unsophisticated), they all said “Yeah, I can see that” when I followed up after one of them said it. Autism Awareness and Acceptance Day is not about feeling bad, it is about growth, milestones, and understanding.

We didn’t understand why she banged her head against the wall, why she hurt herself, hurt us, held her ears and screamed. We didn’t understand her need to be in control, why she “acted out” or, her expressive language delay (because she talked, she talked a lot and never stopped talking!).

We didn’t understand 3 years ago, despite having been through this before. Because, when you meet one person with autism, like Kerry Mangro has said, “It means you have only met one person with Autism.” No two are alike, even relatives. Three years ago, in the midst of the storm of autism that ripped through our lives, we never imagined seeing the sun again.

But looking back, we see exactly how far we have come. How much behavior therapy, occupational therapy, speech, special education services, and treatments have helped her flourish into the gifted and talented little fireball she is.

People are always impressed with Ally. The way she can engage people, her singing, and her beauty. What we don’t share is how hard it can be between the smiling and singing Facebook posts—the struggles, the meltdowns, the holes in the walls.

Her teachers, her paraprofessionals, therapists, and classmates have seen her on her worst days and to some over the years—that may be all they see. Because this is what Autism is—it is an uneven balance between good days and bad days, between skills and struggles, and it shows both the beauty of humanity and the ignorance.

Today, I am grateful for all of the services and programs that have helped us move forward, even though we sometimes go forwards, then backwards and upside down before we continue going forward. Ally is the best and she amazes me every single day, even during COVID-19 on day 20 of our quarantine.

#AutismAwareness

Ally, 3 years old

Today was a bad day

For the past two years, I have been walking around and patting myself on the back.

We successfully changed behaviors in therapy.

We overcame adversities. And aggression.

And I told people about it.

But almost immediately after I share our successes with others or think I have found the light at the end of this very dark tunnel, the magnetic forces of the universe, or fate, or something out of nowhere pokes the bear.

Today was a hard day for Ally. And I am not sure why, but she tried to run away, both at school and at home.

This was a behavior we changed long ago but has resurfaced twice this year, first in the Fall and now. Eloping behavior was why we put her on meds. It was what kept me up at night. And now tonight, I worry what happens when someone isn’t fast enough to catch her.

I think about that day I put my three-year-old on medication because I myself was too injured to chase her.

While I hope this was just a visit from an old ghost, it feels like trauma from our past is creeping up on us, here to remind us that behaviors don’t just go away and that this is our reality.

Or just a bad day.

Arresting Kindergarten Girls is Not the Answer

It is 2020 and we are arresting little girls and locking kids in closets at school because we expect them to behave, and to be two academic years ahead of where we were as kids.

The United States is educated as a society but still, mental health and social-emotional development are threatened with pressures and forcing children to mature at rates that do not align with science. And to add more water to an over boiling pot, disabilities in children are rising to 1 in 6, how can we continue putting demands on our children without considering this?

Visit this article on Medium to continue reading…

There is no summer vacation for working autism parents

February is almost over and the pressure is on.

What are we going to do with Ally this summer—the void of endless time and childcare needs?

The part of parenting I never expected to hate the most is summer. I always imagined we would plan trips, go on adventures, and spend a few weeks together each year making memories, the way families should.

But for our family, there are no vacations and trips as we juggle to pay full-time babysitters and take separate weeks off from work just to get by.

This was supposed to get easier but the permanency of our circumstance stings more as we reach these milestones of darkness.

There was one month that I will never forget—September 2019, Kindergarten, when I paid nearly nothing for an after school program she didn’t succeed in. That was my only financial break in six years. That was the light at the end of the tunnel I had been driving towards and it caused us nothing but stress before it burned out.  

Here I am with my crystal ball trying to predict our needs for Summer before Spring even starts.

How much vacation time do I have left to use?

 Will the last day of school change after I make all of these plans?

What am I going to do in August, the longest month ever?

Should my child be stuck home on beautiful days with a babysitter, again?

Is the lapse in structure and routines going to break her?

Typical kids get to go to summer camp to swim and play outside, things my daughter desperately wants, but she has nowhere to go.

Should I try to send her to a camp for a few weeks? That could be nice. Maybe she will enjoy the outdoors, socialize, and maybe even make a friend. Would the other kids notice an adult attending with her?

Will another camp throw her out? The thought of that is more damaging.

Is it wrong that she has been thrown out of everywhere by three and can never go back?

Then her care team suggests looking at “special needs” camps. That is hard because she does not fit into their box. And I wonder why she has to go to a separate camp.

Is it fair that she is gifted and excluded?

That her playmates are mostly paid, adults.

I breakdown as I imagine her alone desperately waiting for me to take her to the park to find kids to play with. Kids who aren’t her friends, just kids. Kids I hope each time are nice and tolerate her.

Ally isn’t the nicest kid either. She is imaginative, bossy, and literal. She is often a victim of herself and autism.

I’m tired of the fight.

Tired of the segregation.

And tired of people thinking that this is okay.

 That nothing is good enough for my child.

Our life is not fine, but it also isn’t over

Last month’s episode of This is Us has been on my mind a lot lately. The way they captured Toby and Kate’s marital strains of having a child with a disability. 

It felt familiar. 

While Kate embraced her son with joy, as much as she would if he weren’t blind, Toby focused on himself and took distance from his family to focus on his own needs because he admitted that having a blind baby made him sad.

It hit so close to home. 

Of course, my heart was broken the day we learned our daughter had autism. 

But I was there for every moment of it. 

Every doctor’s appointment. 

Every evaluation.

Every IEP meeting. 

Every meltdown. 

I dusted myself off and got back up to fight for my kid. To give her the life she deserves. The life I have to fight for her to have because being sad about it isn’t the answer for me. 

I feel like my husband is never here. Never truly here. 

And when he is, he tells me that all I talk about is autism. That he doesn’t want to hear about it anymore.

That I railroad autism into every conversation. People will be talking about chicken Parmesan recipes and somehow I’m talking about therapies and sensory processing. 

Sometimes when I am hiding in a dark closet from my screaming child because I need a minute, I wonder why it feels like I am carrying more of the load. 

Who decided that I had to be the one to fight with her every morning to get ready for school, to brush her teeth, to eat breakfast?

Why do I have to ask her to put her shoes on twenty-seven times before she actually does it? 

All while trying to get myself ready for work. 

Sometimes I ask him to do more and to do it regularly. But I’m the mom. This is what moms do. 

And it feels like I don’t matter. 

That I have been sucked into the vacuum bag of special needs parenting. 

Why does the school always call me and not him? 

Why does my daughter barge into the bathroom and demand I open a package of goldfish when her father is sitting on the couch?

All of the parent training, behavior plans, and reinforcing her ABA skills at home are put on me because he doesn’t understand it. 

He didn’t learn how to do it. 

And he thinks I am being a raging bitch when he sees me do it. 

And I’ll remind him—don’t comment on her behavior. Work through the attention-seeking fits. Hold your ground. 

No means no. 

Next thing I know we are fighting.

Fighting about autism. 

Fighting about finances and work schedules. 

Fighting about how much I fight with everyone. 

And like Kate, I just don’t get it. I get being sad and trust me—I am plenty of sad over here.

But our life isn’t over. 

I’m not going to be quiet about it and pretend our life is something that it isn’t.

This is who I have become and I am okay with people not liking me. I know that autism is the last thing he wants to hear about when he gets home after a long day but I can’t do this alone.

All we can do

Looking fly at Target 🎯

Sometimes it feels like we are weaving in and out of traffic between the fast lane and a detour.

One of the biggest obstacles Ally has faced is socialization.

At school, she only seems to have one or two friends and during my brief encounters with her classmates, they don’t think much of her. Whether that is adult driven or truly the impression they have of her is unknown.

But what I do know is that we hit a dead end and it has been a long road trying to find the next steps for her to make progress.

When she was 3 and 4-years-old, I sent behavior therapists to daycare and summer camp almost everyday. Ally received anywhere from 20-30 hours of therapy in a social setting that aided her when interacting appropriately with her peers. We made strides and true progress.

But as all of you who follow me know, she has been expelled from every program out there where typical peers are present.

With that, her progress was paused and forgotten.

It has left me saying, where do we go from here?

I say this often and I want to reiterate it again—I am not that mom who expects the public school system to raise my child for me. That is not me.

I do my part in helping my child succeed at school but there comes a point where I get stuck—when there is nothing more I can do. Socialization is it for us.

Today we started ABA company in a center-based environment rather than in-home. It is not totally new to us since she has been getting OT and Speech at this center for three years, but joining their social skills and working on peer interaction is.

We now spend three hours in therapy on Sundays.

While she still does not have access to socialize with non-disabled peers in an environment where hands-on interventions can be done, this is what we can do.

I didn’t know how she was going to handle spending three hours in an environment with demands being put on her but she did it.

And we will continue to do it because this is all I can do.

I can spend three hours every Sunday teaching my kid how to socialize so she can function better at school, and in life, while her non-disabled peers are playing sports and making memories with their families.

This is our world. We keep going.

This is what Inclusion looks like

Imagine walking into a classroom and seeing everyone engaged in learning, where some students are working in a group while others work independently. Some are sitting on bean bag chairs while others are standing while they learn. Maybe some students prefer to type while others write by hand or on a tablet, and some read traditional textbooks while others use e-readers.

And the teacher isn’t losing their mind while trying to keep every individual student on the same page at the same time.

My point is — if you are looking at a traditional classroom where all of the students are sitting forward attentively listening, you have the wrong idea on what inclusion really is.

To continue reading, please visit this post on Medium.com.

This is us

I was never a morning person. Never a solid routines person either.

I was never on time or organized. I had piles of chaos but could tell you exactly where everything was.

And I remembered everything without ever taking notes. 

I stayed up late and didn’t worry about the next day. Or the future. 

I never worried about money or saving all of my sick time to use for someone other than myself. 

I took vacations. 

And then I had a kid. A kid with autism. 

I learned that it doesn’t matter whether or not I am a morning person because she is a morning person. 

And routines are life. 

Schedules equal sanity. 

And if I don’t know where her doll’s purple shoes are with the yellow flower at all times, there is going to be a tantrum.

And if I don’t keep up with her therapy, care, and education plans—She suffers. 

Being a mom changed me. It made me worry about tomorrow, and about myself, and what if I am not here.

Some would say I am not fun anymore because the kids go to bed early and we spend our time with them instead of partying like it is 2004. 

And I don’t recover the way I did in my twenties. 

While I used to remember everything I needed and everywhere we had to go, now I feel like I am always forgetting something.

Like why I walked into a room.

Milk.

Putting gas in my car. 

And I go to bed early because she is going to be up at 7 am, even if I keep her up until midnight. 

And as much as I need a vacation, we never have enough PTO left to take one as a family. 

Because this is our life now as morning people who are organized, who follow routines, worry, and spend all of our money and PTO on taking care of children. 

This is us. Not just me.