The Glass Child

 

Being Ryan’s mother has always been at the top of my list.

 And like I had said before I can be selfish.

I wanted the experience that other women were having as mothers.

I wanted the funny stories kids tell their moms about their day, the sports teams, and typical after school activities.

I WANTED THE NEUROTYPICAL EXPERIENCE.

 So, I clung to that selfish part of myself, and we tried and tried and tried to get pregnant.

 

And eventually we did. And Conner William Newbold was born. I was ecstatic and all signs pointed to us having a taste of the neurotypical lifestyle. Ryan enjoyed him when he couldn’t get around but as soon as Conner started to be on the move. Ryan rolled his eyes more often than ever.

Baby Conner

Ryan calls Conner, The Baby. Which seems ominous. lol.

Unfortunately, after Conner was born, Ryan’s medical needs increased. We had identified that Ryan had, at some point, had a stroke. This was why his right side was so weak and most likely why his speech was slow in developing. He started having seizures and then we found out that he has a horseshoe kidney which shouldn’t affect him too much, except for the fact that his seizure meds are hard on his kidney. So, at this point he had his therapies and then we had to add a Neurologist, a Nephrologist, and a Genetic Counselor into the mix.

I started having to constantly travel with Ryan to his appointments, there were financial strains as Ryan’s Medicaid was still in the approval process, and Jamison and I still worked full time jobs.  On top of that Ryan was having more behavioral issues such as eloping, little to no sleep, and severe pica.

And through it all Conner was there, perfectly healthy.

No worries

No issues

Just a healthy baby boy.

And I had to have a long hard look at myself and our life. Where did Conner fit into all this?

Then a new parenting fear presented itself. (Cue dramatic music)

Glass child syndrome.

Some people have never heard of this but since I’ve worked in the mental health field, I have encountered some glass children myself.

What is a glass child? Well, they are a child with a sibling who has a complex health condition. They are called glass children because their parents look right through them. They don’t have the issues the other child has so they’ll be fine with less attention. Except, they won’t. They can end up with depression, anxiety, PTSD. They can have poor boundaries and become people pleasers. I don’t want that for Conner.

 

So why would a parent do this to their healthy child? Simple. It’ not always the parents’ fault. Sometimes we try our best but taking care of a healthy child is hard enough in society, much less one who has complex health issues. If we look at this from a community level, respite and more home care options for these parents would relieve enough time for parents to make sure both children are getting what they need. Assistance with the financial strain of having a complex child wouldn’t hurt either. It’s hard to balance the emotional, physical, and financial stressors of being in this situation. Unfortunately, these types of social programs can be hard to come by.

 

 

So, what do we do???

 

WELL…

I started looking into community activities that Conner might enjoy. We recently signed him up for basketball, it wasn’t his favorite, but it did get him out of the house, and it gave him some one-on-one time with mommy and sometimes daddy. Conner has asked to try tee ball and football as well.

Conner

And we look to our friends and family. Fortunately for Jamison and I, we do have my sister, our parents, his sister, and some amazing friends. Our parents split the weekdays and watch the kids while we work.

My sister, Wendy, and her husband Justin are able to take the boys out for one-on-one trips. And as Erin Morganstern put it, “I would be better off without a hand or a leg than without my sister.” Which is so true. The other day Conner asked me for ice cream, and I said we were out, he took one look at me and said, “When is Wendy going to be here?”

Wendy and Ryan

Justin and Conner

Justin and Ryan

And lord knows my children worship the ground that their Uncle Justin walks on. Ryan tends to gravitate more towards Justin. Or Unc, as he calls him. Conner talks about Justin’s bright blue car all the time and enjoys shooting him with his nerf gun. Lol.

Making sure the boys get one on one time and that we take them on family trips that they can both get something out of. That’s been a huge focus. We go to the zoo, back to Buffalo, and we even took a trip to Destin, Fl.  

Jamison and Conner

We also have our friends Vicki and Zach. They have two kids of their own. The boys love hanging with them, and we plan day trips with them. And fortunately for us, they are amazing people to have around because they work to teach their children about autism and disabilities, so their kids don’t avoid Ryan or act like he has the plague. They embrace him and he absolutely enjoys seeing them. Which says a lot because Ryan typically doesn’t like to hang with other kids.

And then there’s Brittany and Josh. Brittany is my person…a beautiful, majestic, land mermaid of a person. (Some Leslie Knope Vibes for you.) She’ll do whatever she can for either of my boys. And she always has, she’s not blood, but she’s my other sister and she’s been with me at every important milestone of my life.  Josh, Brittany’s boyfriend, is at every gathering and can connect with both my kids. Not to mention when my car literally went up in flames, he was able to get me set up in a new one. So, if you ever find yourself in the Richmond, Indiana area and in need of a vehicle, Josh Rush at Wetzel Chevy is your man. Lol.

Brittany and Ryan

You have to focus on building your own little village and finding people that will love you and your kids no matter what. Fortunately for us, most of our people have been with us from the beginning of this journey, but I have also connected and met some really cool people along the way. I try to reach out to other Autism parents online and have even been able to connect with some in person. So, if you feel isolated and start to fear what I like to call, the glass child complex, and need a helping hand, there’s always room in my village.

We have to work on being self-aware and really dig deep to make sure our children feel secure, safe, and above all else unconditionally loved.

 

 

“One generation full of deeply loving parents would change the next generation, and with that, the world.” – Charles Raison