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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.”

One thing that I love about social media is that it connects us with people we would never meet “in real life.” 

I met Ashley, an adult AAC user, in a Facebook group.  She had written a story where she mentioned her AAC device.  I am always so interested in learning more from people who use AAC, so I reached out to her.  She agreed to answer some questions that I had – I hope you enjoy her interview!

My name is Ashley Mohesky, and I was born with a neurological disorder called cerebral palsy. I am in a wheelchair and use an eye tracking communication device. Currently, I am in graduate school to become a Licensed Professional Counselor in Texas. After I graduate, I plan to work with individuals who have depression, anxiety, bipolar, or chronic illnesses. I also would like to work with parents who are raising children with disabilities. My device is called a Grid Pad (I use it via eye tracking), and it’s from a company called Smartbox, located in the UK.
What was it like for you before you had a device to communicate? How did you communicate prior to having the device?
Before receiving my device, I would get angry because I couldn’t express my feelings or thoughts. I can talk, but the muscles in my mouth do not function properly, in order to be able to make appropriate letter sounds, so it makes it harder for people to understand what I am saying verbally. I communicated by using modified sign language. For example, if I was hungry, I would open my mouth and point instead. I also communicate with my family by air signing letters. If I wanted to say hello, I would write the letters, one by one, and the individual would repeat it back to me until the word is spelled. I still use this method today when talking with family.

At what age did you start using AAC? How did it make you feel to have it?
I started using AAC around four years old. I was in a special education pre-kindergarten classroom, as my parents did not know how much cognitive awareness I had at the time, though it was apparent that I did have some cognitive functioning. My teacher had a suspicion that I was at a higher level than the other students because I laughed at a joke that someone made when the other students did not. From there I received a device called a Dynavox, and blew everyone away by my ability to use it well. Shortly after I was transferred to general education and excelled throughout the years. I do not remember how getting the Dynavox made me feel because I was so young, but the fact that I tried to program it myself and had to send it off for repairs, indicates that I was ecstatic to have something that could be personalized to my style of communication.


Is there anything that is hard for you today as an AAC user? (Are people patient, Understanding. Etc?)
When people first meet me, they often times don’t know how to talk to me because I do use a different means of communication, but once I say a sarcastic remark, the fear of not knowing how to interact with me subsides. I am fortunate enough to not have had too many negative reactions when using AAC in the community.

What advice would you give to parents and children who are embarking on a new AAC journey?
AAC is a complex form of communication that takes time and patience to learn. My advice is to allow the child to learn their device at their pace. Also, it is important to note that even if you know what your child is telling you, encourage them to use their device, as it will help them to become accustomed to it.

What do you want the world to know about AAC?
If someone is using AAC, don’t be afraid to strike up a conversation with them. It may take a minute for the person to express what they are trying to convey, but it shouldn’t prevent you from talking to them. Everyone has the ability to communicate, AAC is just a different form of it, and it doesn’t presume incompetence.

Ashley – Thank you so much for taking the time to answer my questions. I hope that you continue to speak up and advocate for those who communicate using AAC. Good luck in school – you’re going to do big things.

Dear Special Needs Mama –

I see you.

You’re chasing your child who runs at any chance he gets.  You’re trying to stay calm, but you also know that you HAVE to catch him because there is a road nearby, and he has no fear…and he seems to get faster every day.

I see you.

You’re trying to help your child through a meltdown.  He is kicking, screaming, and going “no-bones-jello-dude” on you, and my eyes go straight to you.  You’re sweaty, trying to wrangle your kid.  People are staring, and you’re so embarrassed because you know what they’re thinking. (“She’s a bad mom.  He’s a bad kid.  My kid wouldn’t act that way.  He needs some discipline.  They should have stayed home if he was going to act like that.”)  To others you look calm, but I know you’re on the verge of tears.

I see you.

You’re trying something different, going outside of your comfort zone.  You just want him to try things, to be a part of the world…but I see your anxiety too.  You’re on edge, just waiting for him to run.  Or scream.  Or throw something.  You’re trying to stay five steps ahead, always preparing for the worst, but hoping for the best.

I see you.

You’re not really a part of the group.  Other parents can have a conversation, but you’re never fully engaged.  You’re always watching your child, half listening to the adult conversation while 100% attending to your child’s needs.  When he takes off running, you don’t miss a beat, always ready to pounce. I know it’s exhausting.

I see you.

You’re trying to live your life just like everyone else, but you didn’t sleep last night.  You’re going on years of very little sleep, and it’s aging you.  Life is hard when you’re sleep deprived.

I see you.

You’re budgeting, counting pennies, trying to make it all work.  Meeting your child’s needs is expensive.  But you make it work because he’s worth it. You cut costs where you can, and you work as much as possible, but the financial burden is a big worry for you.

I see you.

You worry.  Will he be okay?  How will we get through this?  Will he ever make a friend?  Why my child?  Why me?  I wasn’t prepared for this.  Who will love and care for him when I die?  I can never, ever die.

I won’t tell you that “you’re the best mom,” because I know that you had no choice.  You do what you have to do.  When you become a parent, there was no way to know what kind of child you would get.  You got “the difficult child,” so that’s the child you stepped up to parent.

I won’t tell you that “I don’t know how you do it, I just couldn’t do it.”  I know that saying hurts, even though it wasn’t meant to.  Because honestly, you don’t know how you do it either.  You just do.  No one knows what they can do until given the opportunity.  You aren’t stronger or more patient than anyone else…you just became the parent your child needs.  It looks hard to other people because it IS hard.  It’s just as hard for you as it would be for anyone else.

I won’t tell you that “God won’t give you more than you can handle.”  Because He will.  He does.  In your case, He did.  I do know, though, that God CAN handle autism.  He will give you the tools you need, and more importantly, the PEOPLE you need to get you through.

I see you.  I respect you.  Keep going, Mama.

I was recently reminded just how important it is to find “your people.”

Guys, I have a great support system, I really, really do.  My family cares and helps me.  I have the best friends who support me.  I have church family and coworkers.

They’re all great, but I think – as a special needs parent – you need a different type of community.

Because here’s the thing:  your mom might be the most wonderful mother ever…but she has never raised a child with specials.

Your best friend might be a true ride-or-die kind of gal who loves your kid like her own…but she has never raised a child who has special needs.

There is just something special about connecting with other moms who “get it.”  They are living the special-needs-parenting-life just like you.  They know the daily struggles, the worries, the fears.  They understand that everything (literally e-v-e-r-y-t-h-i-n-g) is a battle.  They understand the balancing act you do when you’re trying to raise a child on the spectrum AND a neurotypical child.  They, too, are skirting that fine line of “let’s expose him to things to give him experiences” and “we don’t want to push him too much.” They know the work it takes, the dedication you need, and they’re also experiencing that exhaustion that only another autism mama would understand….hello, caffeine.  (Please and thank you.)

I’ve met strangers and the second we find out that we’re both autism moms, it’s like, “Did we just become best friends?!”  It’s an instant bond – a connection formed through our shared experiences.

I’ve met moms through social media who I consider true friends.  We haven’t met in person, we live states away, but I consider them go-to’s for advice and comfort.

So go find your people.

Now, I’m not telling you to go find strange people online and try to become their BFF, but I am saying that you need to seek out other parents (just find the cool, safe ones!). It’s good for the soul – to connect to others who just get it.

Go find your people.

Church.

It’s always been hard for us. 

This week, Colin got to attend his first-ever Vacation Bible School, and he had the best time.

We started off a little rocky on the first night – and that was my fault. I set this standard – this goal – in my head: he was going to attend each little activity.  He would sit.  He would listen.  Well…he didn’t do that, and I got frustrated. 

I re-evaluated, and checked my expectations at the door the next night.  We followed his lead.  If he wanted to walk around, then we walked around.  He went to snack, craft, and game time.  We gently pushed him when we could.  Sometimes it took five of us to complete one craft with him, but it got done!

Tonight, I watched him run through the mosh pit that was a bunch of 1st and 2nd graders dancing to the VBS songs.  He wasn’t doing the choreography like they were, but he was happy doing his own thing.  My legs were tired from chasing him, my arms were sore from carrying him back to the group for the 50th time tonight, but my heart just had to smile.  He’s worked so hard to get here…and I’ve done a lot of praying. 

So many people came up to me this week to comment on how far he’s come, how well he’s doing, and to say how much fun he’s had this week.  They’ll never know how much their words meant to me.  To know that they see him – truly see him – and support him, that means so much.  I think this smile says it all. 

Dear Expecting Parents:

A couple of weeks ago, I got to spend the week at the Pittsburgh AAC Language Seminar Series (PALSS).  We spent two and half days learning about Minspeak, working with Prentke Romich AAC devices, and meeting other professionals within the AAC world.  I thoroughly enjoyed my time there, and highly recommend it to both professionals and parents.

As part of the seminar, we had the privilege of speaking with some adult AAC users.  I shared a documentary on my Facebook page last week called, “Only God Could Hear Me.”  We were able to meet Jennifer, and we had a Skype call with Chris.

I really related to Chris because he and I are both religious people.  He spoke about being upset with God for many years and finally finding his purpose in life.

I had so many questions for him: What was it like to be nonverbal?  What was the most frustrating part for you?  What was it like once you finally got your device and had the ability to communicate?  What struggles do you still have today?

I ended up asking him, “When did you realize that it was okay to be different and your life has worth?”

Because to me, Colin is perfect.  He is different, but he is absolutely, 100% perfect.  I love him just as he is, and I want the rest of the world to see how amazing he is.  I want everyone to accept him and support him….but I also want him to love himself.  Being different isn’t easy, especially for kids and teenagers.  I knew that Chris would have an insider’s perspective on living in a world that just doesn’t always understand you.

His response:

I was probably 22.  And I would try to point out to him, “Hey, everybody has a disability.  Most people can hide it, but everybody is different.  Everybody has their struggles, and everybody has a purpose too.  It’s a choice of what you do with your life.”

Cue the tears.

Because everyone does have struggles.  No one has the perfect life.  We must live the life that we have been given.  We can choose to wallow.  We can choose to be complacent.  We can choose to give up. We can choose to just exist.

Or we can choose to really live the life we have.  We can choose to fight.  We can choose to persevere.  We can choose to be happy.  We can choose to use our lives to help others.  We can choose to really be who we are and know that it’s who we’re meant to be.

Thank you, Chris for your wisdom and for choosing to share your story with crazy, crying mamas like me.