Month: October 2019

When your child has special needs, there are a lot of hard things that come with that.  One of those “hard things” is seeing their difficulties spelled out in a report.  Seeing standardized scores is literally looking at a visual representation of your child’s struggles.

When Colin received his official autism diagnosis, just reading those numbers physically hurt my heart.  I knew he was behind.  I knew he was struggling…but to see it on paper made it real.  Official.

Two years ago, Colin was diagnosed with Level 3 Autism Spectrum Disorder.  According to the DSM-5, this is the most severe form of autism and requires very substantial support.  

I’ll never forget the exact wording:

autism spectrum disorder, requiring very substantial supports for deficits in social communication and substantial support in restricted, repetitive behaviors, with accompanying language impairment – no speech.

His prognosis was described as: Fair with intervention.  Without intervention poor. 

If that isn’t heartbreaking, then I don’t know what it is.

…but he did get intensive intervention when he started ABA about a year and half ago.  We had his six month review yesterday – and I always look forward to those meetings.  I see his progress every day, but I love getting to see his progress on paper.

This kid is amazing.  To see his progress just floors me.  To know where he was two years ago…I never would have expected this much growth in such little time.

It’s not that I didn’t believe in him, because I did.

It’s not that I didn’t hope, because I did.

I just had no idea what to expect.  I didn’t know just how far ABA would take him, but let me tell you, my expectations have been met, exceeded, and truly blown out of the water.

As I looked at his most recent testing results, I cried.  (I know you expected no less).

I cried because I remember the days that I prayed for this. I prayed for him to communicate.  I just wanted to connect with him.  I wanted him to be happy.  I wanted him to play with his brother.  I wanted to help him, but just didn’t know what it was that he needed.  ABA has been the answer to my prayers.  After years of begging God to help him, He led us to the most amazing ABA clinic.  Our journey to these most wonderful people was not just coincidence, but divinely planned, I’m sure of it.

I cried, because I know just how blessed, fortunate, and lucky we are to have this intervention for Colin.  He is one of the few kids in our state who has access to this life-changing intervention. Fewer than 10% of the autism population here has access to ABA, and that fact isn’t lost on me.  My heart breaks to think of how many children could have the same successes if only given the opportunity. 

I know that many people believe that ABA is controversial, but good ABA? It is life-changing.  We aren’t trying to make Colin “not autistic.”  He will always have autism.  No, we are trying to help him.  Support him.  Set him up for success. Prepare him for life.  We are meeting him exactly where he is and will continue to encourage and push him to even greater feats.

Colin, you are one amazing, awesome kid. You are going to change the world, Stink.

Do you ever wonder what it’s like to have a nonverbal child?

If you’re a parent, think about your child.

Think back to their first words.  Those long-awaited “Mamas” and “Dadas.”

Within a few months, they’re using dozens of words.  Naming their favorite people, snacks, and toys.  Participating in social games and saying “bye-bye” when people leave.

The next thing you know, they’re putting words together.

Then come the questions:

What’s that?

Why?

Mommy!  Mommy?  Mommy?!  (“Mommy” is then multiplied by 4,000 times each day.)

Suddenly you have this little toddler who talks all day long. Questions.  Requests.  Comments.  More questions and more “Mommy’s.”

You get to hear about their favorite books and favorite tv shows.  You know about their favorite colors and favorite toys.  You have tea parties, and you know all about their stuffed animals and their thoughts too.  (Because toddlers have this gift of communicating with and interpreting for their toys, in case you didn’t know.)  You hear all about their day.  You hear them say, “I love you.”

Then they start school.  You get to hear about what they are learning and who they played with at recess.  You get to hear about their lunch and whether they liked it or not.   You get to know their thoughts and help talk through difficult things with them, like death and bullies.  You get to talk with them about the exciting things too, like new friends and fun games.  You hear about the latest trends and fads and music and….well, everything.

Now, imagine you never got to hear any of that.

No first words.

No “Mama” or “Dada.”

No “Mommy” 4,000 times a day.

No “I love you.”

You don’t get to know their favorite color or hear about their day.  You don’t get to know what they’re thinking. You know they have questions, but they can’t ask them.

Imagine a world where you lost all of that with your child.  How much would you want to know about them?  Wouldn’t you wonder about…well, everything?  That’s what it’s like having a nonverbal child.

For many parents, this is their reality.  Many never even get to hear their child’s voice.  They know their child has things to say, but they can’t talk….so their thoughts and feelings and words stay in their own minds. 

Now imagine being the child who cannot speak.  How frustrated would you feel?  How much would you wish to communicate if given the chance?

October is AAC Awareness month, and I want people to know just how life-changing AAC can be.

Augmentative Alternative Communication (AAC) can give a voice to those who cannot speak.  Being nonverbal doesn’t mean that you have nothing to say – it just means that you need another means by which to express it.

My son’s use of an AAC device has changed his life.  Communication is so powerful, and it opens up the world to us all.  Yes, AAC has given him the ability to communicate with us, but do you know what else?  It has given us the opportunity to get to know our son in a way that we couldn’t before.

I had a conversation with my mom last night.  It was something that I think about every single day, but rarely say aloud.  It was a topic that – for my sanity and survival purposes – I have to push to the back of mind.  It is always there, but for now, I can’t let it dominate my thoughts or else I’d drive myself crazy with worry:

I was 28. (and still looking young, I might add.  Oh, children who didn’t sleep for 5 years, how you’ve aged me!)

Finley was 7 months old.

I was 18 weeks pregnant with Colin.

(My husband-slash-photographer was 29…I always have to remind him that he is – and always will be – older than me.)

I remember this phase of my life.  I was showing already (second baby problems!), and many strangers had a lot to say:

“Wow.  You’re gonna have your hands full.”

“Pretty close together, don’t ya think?”

“You do know what’s causing that, don’t you?”

“Oh man, two boys?! Will you try again for a girl?”

What those people didn’t know was this:

I had suffered from infertility.

I was told that I wouldn’t be able to have babies.

We had to do fertility treatments.

Our first pregnancy was ectopic and required emergency surgery.  I had seen and heard my baby’s heartbeat before I went into surgery to terminate the pregnancy because my life was in danger.

Our IVF cycle gave us three perfect embryos.

We lost two of them.

Those were hard times for me.  Everyone had advice during our times of infertility and loss, too:

“You’re trying too hard. It will happen when you stop thinking about it.”

“You should just adopt. My neighbor’s sister’s friend’s cousin’s hairdresser adopted and got pregnant the next month.”

Then when we lost our first baby:

“It’s for the best. There was something wrong with that baby, that’s why that happened.”

“It just wasn’t meant to be.”

So to those strangers who had advice and comments for me, here’s what I want you to know:

When someone goes through infertility, it is real…and it’s real hard.  Medical issues are just that – they aren’t things easily resolved by “just adopting.” (Which, Come on, there is no “just” to adoption.  It is a big deal.)  Unless you’ve lived it, you couldn’t possibly understand, so there is probably very little you can say to “help.”

But you know what you could say?

“I’m sorry.  That must be hard.”

When someone loses a baby, no matter how far along into a pregnancy, it is awful.  They’re going to be sad, angry, frustrated, bitter….that’s normal.  Writing it off as, “not meant to be…” well, that hurts.  That was their baby.  Their loved baby.  Their missed baby.  Just know that. They’re going to be sensitive to others’ pregnancy announcements.  Know that too.  They aren’t bad people, but they are hurting.

People looked at me with a seven month old and almost five months pregnant and thought I was nuts.  Well, in all honestly, Colin was not planned at all.  I was infertile, remember?!  Yet God has a sense of humor and here he is.

Here’s the other thing that people didn’t understand:  I felt so blessed to have my perfect little baby boy.  For the longest time, I thought I’d never have a baby, so when he FINALLY came along, I was over the moon. 

Then to find out that he would in fact get to have a sibling?!  Wow.  That was awesome.  I’ll admit, I was a little scared and worried because Mr. Finley was a horrible sleeper (and Colin turned out to be even worse than his big brother).  I was exhausted and wondered how I would do this with two babies.  I knew it was going to be hard, but all the good things in life are. 

I still look at those boys now -big 6 and 5 year olds – and I’m so thankful for them.  Infertility changes you.  Infertility shaped me more than anything ever had until that point in my life. There is something about being told you’ll never have children – to then have the two most beautiful and perfect little boys ever, well, it just makes you appreciate them that much more. 

I am very open about our fertility struggles because it can feel so isolating.  I want to let others know that it’s okay – you are not alone.  I love that saying, “share you story because it will one day be a part of someone else’s survival guide.”  I wholeheartedly believe that – we need each other for the hard stuff. 

I am 1 in 8

I am 1 in 4

First words – aren’t they amazing and wonderful?!  

*We are all home safe and sound*

As a parent, I think we all worry about losing our children in a crowded place.  As a special needs parent, we know that this could very easily be our reality…and it’s terrifying.

My worst fear became a reality this weekend.

We went to a local fun farm place this weekend.  Corn bins, hay bales, slides, and animals. The boys were having such a good time.

Then I lost Colin.

He was playing.  I was right there with him.  I put him down a slide then went back down to meet him at the bottom…another kid got out of the tube, not Colin.

I looked up, thinking I’d see him just right around me somewhere.

He wasn’t there.  I panicked.  I grabbed Finley and told him to go get Grandma, we needed her help finding Colin.

I really don’t know what I did next.  I think I just stood there, looking.  Searching.  I screamed his name a few times, knowing that was crazy because he wasn’t going to come to me regardless of how loud or how much I called out to him.

I just saw all of these people, wandering.  Playing.  I knew that I needed their help, but my mind was blank.  I didn’t know what to do.  Another mom came up to me and asked if I was okay.

I said, “No.  My son is autistic, and I can’t find him.”

She went to get a worker to help us.  I ran off.   What if he went into the corn maze?  What if he went to the parking lot?  What if….?

This just couldn’t be happening.  I watch my kid.  He runs all the time, but I’m always right behind him. I know where he is all the time.  How could he be gone? I plan.  I make back-up plans.  I survey all locations, making sure I know every entrance, every possible exit.  If he even thinks about running away, I’m right behind him.  This couldn’t be real. It was almost as if time had stopped.  My brain was working so fast, but my body just couldn’t keep up.

A woman who worked there came and took me by the arm.  She assured me that he was okay.  They’d find him.  I heard someone come over the radio and say, “I just saw that kid by the big white slides.  I have him.  He’s here.”

Lois was her name, and she walked me over to the big white slides.  It was over the hill from where I had lost him. I looked over the hill, and sure enough, there he was -just getting off of the slide.  Smiling.  Playing.  Not a care in the world.  He didn’t know that I was worried sick.  He knew where he was…he was just sliding. He was wearing his Hakuna Matata shirt, and sure enough, he was living his best “no worries” life.

I ran and grabbed him.  I cried.  Lois hugged me and assured me again that it was okay.

I want to thank Lois for getting me to my Colin and for showing such compassion when I needed it.

I want to thank all of the workers who helped us find him.  I couldn’t have done that on my own.

I want to thank the mom who saw my distress and helped me out when my brain couldn’t come up with a solid plan of action.

I want to thank the little boy who checked on Colin’s grandma, saying, “Did you find him? Is he okay?”

It’s times like this that I need a village.  These strangers stepped up and helped me find my Colin.  I hope they know just how much this meant to me and our family.

I plan to go the local Sheriff’s Department next week to get a Project Life Saver bracelet.  We need that peace of mind if this ever happens again.  I’m also looking into Angelsense, etc.  We need to know where he is all the time.

Elopement is real, and it’s scary.

I am sharing this story to help people understand the seriousness of having a child who has communication difficulties.  The dangers we face just by going out and having fun, like kids should be able to do.  To understand how vigilant we as parents must be…and even when we are, scary things can still happen.

When we got home, Finley said, “I’m so glad we found Colin and he isn’t lost.  I want our Colin always, nobody else.”

Me too, Bub.  Me too.

October is awareness month for so many causes that are near and dear to me: AAC, infant and pregnancy loss, and breast cancer awareness.

Let’s start with Breast Cancer Awareness Month.

I wasn’t going to share this, but I hope that it will be a good reminder to someone out there.

In the last two years, I really let myself go.  I stopped taking care of myself.  My sole purpose in life was getting Colin the help he needed.  Making sure that Finley gets to live a “normal” life.  Working to help make money.  Keep our household running (and semi-clean).  Advocating and educating – you know, “changing the world.”