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10 Minutes With: Shaina Honderich

Meet Shaina, mom to Kennett. Like Meredith (whose name is the “M” in MTeam, Kennett was born with FOXG1. Below, Shaina tells us a bit about Kennett’s life, his sweet personality, and a few of the times she’s been especially proud of him. She also shares her own advice to other parents just finding out about a FOXG1 diagnosis and a few tips for those of you who may feel a bit nervous about meeting someone with special needs for the first time.

 
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MTEAM: Tell us a bit about yourself and your family.
SHAINA HONDERICH:
My husband (Greg), Kennett & I (Shaina) live just outside of Ann Arbor, Michigan. Kennett will be 3-years-old in May. Greg works as a routing engineer for Waste Management and I am a homemaker; I also have a side direct sales business with Maskcara Beauty. But most of my days are spent caring for Kennett and taking him to his different therapies and appointments. We love hanging out as a family. Reading. Watching movies. Going to the zoo. Kennett loves being outside, especially in warm weather; once spring comes, we’re outside a lot. 

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MTEAM: Your son Kennett was born with FOXG1. Can you explain what that means to anyone who is hearing of this for the first time? How has it manifested itself in Kennett’s case specifically?
SH:
I had a very normal, “typical” pregnancy. Kennett was born at 42 weeks, 1 day. We struggled with breastfeeding, but he was still gaining weight, so I just kept working at it. I really didn’t start noticing anything different with Kennett until his 4 month well-child check. There were some developmental questions that were asked that he wasn’t meeting. Plus, his eyes were still crossing a lot. I knew it was normal for eyes to cross in newborns, but his never went away. Around this time his weight also became a concern. His pediatrician suggested supplementing with formula. We tried so many! And nothing seemed to be working. From this point on, I felt like I was going to the pediatrician once a week because something just didn’t seem right. He still wasn’t meeting milestones and not gaining weight.

Finally when he was 7 months old, he went over a day just refusing to eat anything I tried. I took him to the ER and we ended up being admitted in hopes of figuring out what was going on with him. He had an MRI and they found that he has dysgensis of the corpus callosum (the bridge in his brain didn’t fully develop). This also lead to the beginning of genetic testing, where we finally got the diagnosis of FOXG1 Syndrome.

The FOXG1 Gene in utero is responsible for turning on many of the brain development functions. Because Kennett’s is mutated, it caused the dysgensis of the corpus callosum. Kennett has a global developmental delay, so for example, he’s almost 3, but doesn’t walk, he army crawls. He also doesn’t have any words, he babbles a lot and seems to understand A LOT, but has no current way of communicating back to us.

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MTEAM:  Tell us more about Kennett! (How old is he? What does he love most? What makes him happy? What makes him uniquely Kennett??)
SH:
Kennett will be turning 3 in May of this year. He is just the happiest little guy around! He is seriously such a joy. He loves to laugh and he loves to hear and make others laugh, too. He loves to be praised, so we really like to encourage that and praise him any chance we get. He absolutely loves dogs. He thinks they are the best thing ever (too bad mama is allergic, otherwise I know his daddy would’ve gotten him one already!). His favorite TV show is Puppy Dog Pals on Disney Junior. He has a few toys of the characters from this show, and as soon as he sees the puppies from this show... man does he light up! He also has this very specific scream(?), for lack of a better term, that he uses while playing with his puppies. It is so fun to watch.

 
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MTEAM: What’s a typical day in Kennett’s life like?
SH:
Day to day, it varies quite a bit. Our days are usually scheduled around appointments. Every week we have Speech, Occupational and Physical Therapy. Then we have Early Intervention services through our local school district twice a week. Plus any other specialty appointments (GI Doctor, Neurologist, etc.). We work really hard daily to get Kennett to eat. We’ve finally gotten to the point where he doesn’t fight much to drink a bottle anymore, so now we’re working on getting him to eat solids regularly. He also doesn’t sleep much at night; it’s very much like still getting up with a newborn to 3 month-old baby every night. He does very rarely sleep eight hours straight, and those nights are glorious!

 
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MTEAM: What sort of advice would you give to parents who are finding out about a FOXG1 diagnosis for the first time?
SH:
Take time to grieve the expected life you thought you’d have. I hope that makes sense. I know for me, when I was pregnant I planned this whole life for the little one growing inside of me. Dreamed of him walking. Talking. Playing sports. So many of the “normal” things. Having a child with FOXG1 brings a whole new normal to daily life though. Just know it’s ok, and almost necessary, to grieve those expectations.

I think it’s also important to not compare your child to any other (as hard as that is!). Even comparing to other children with FOXG1 Syndrome can be so burdensome. The variations of how the mutation effects each individual has so many differences that it can become such a huge weight to put on your shoulders. Don’t get me wrong, I still catch myself in that comparison game, but then I just remind myself that Kennett is an individual with a very unique mutation specific to him. So while he may not be able to do some things other children can with FOXG1, there may also be things he can do that others can’t.

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MTEAM: What would you say to anyone who has an opportunity to meet someone with FOXG1 (or others with different abilities) for the first time but feels a lack of confidence about how to interact with that person?
SH:
Don’t be nervous! Disability is not inability. Just because someone looks different, or cannot communicate in a typical way, doesn’t mean it isn’t possible. It may just look different than you expected. Honestly, starting out by interacting how you would to any other other person is the best way to start. Then you can go from there. 

 
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MTEAM: What have been some of the biggest challenges you’ve faced along your journey with Kennett so far and what do you love most about being his mom?
SH:
The busyness of having a child with special needs has been very hard for me. I’m a very introverted person and I thrive on having days that I can stay home and do nothing. That’s how I recharge personally. Unfortunately, we don’t get many of those days. They’re usually filled up with appointments and therapy. Which, in retrospect I know I am totally ok with. We’ve seen such huge benefits and gains from all of the appointments, so I know it’s the right choice for Kennett.

What do I love most about being Kennett’s mom? Everything! He is seriously just the sweetest little boy. He loves me fiercely and loves to cuddle; how can I not love and soak up every minute of that?! 

 
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MTEAM: What key changes do you think would make this a more inclusive world for Kennett?
SH:
Honestly, I haven’t had an experience (yet) where I’ve felt like Kennett was excluded from something because he’s different. I’m not sure if that is because he is still little or not. I’m sure at some point I will feel like he’s being excluded because of his differences. But thankfully, I haven’t experienced that yet. Our family is very supportive and help us a ton. Our church family is the same. In fact, at church, they’ve really been the ones to push me to have him be in his appropriate aged classroom (I’ll admit I kept him back in the nursery rooms with younger babies for probably too long). But this past weekend, he was in with the other 2-year-olds his age and I was told by the workers in there that he absolutely loved it. I’m also very thankful to go to a church that has an amazing Special Needs Ministry, so if we get to the point where we need it, I know that it’s available.

 
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MTEAM: Share a memory of one of the times you’ve been especially proud of Kennett.
SH:
I can think of so many times I’ve been proud of Kennett. Recently, he had to have a 48hr EEG. He was so well behaved, I couldn’t believe it. He also works so hard at therapy, he’s very compliant, like he knows that what he does with his therapists is helping him, so he just does it. Another thing that comes to mind is our recent trip to Disney World. I really wasn’t sure how things were going to go, but he absolutely loved every moment of it! He was so good, and just really went with the flow. And if you’ve ever been to Disney, you know how it’s a constant go, go, go when you’re there. He especially loved the characters; this picture with Mickey Mouse is my absolute favorite. Kennett just cracked up the whole time we were with Mickey.

 
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MTEAM: What’s one thing you’d like the world to know about Kennett or for Kennett to know about the world?
SH:
I don’t think I can say it enough. Kennett is really just the happiest, sweetest boy ever. He has his challenges developmentally, but man does he give the best smiles and cuddles, and he works so hard to overcome those challenges. I honestly believe (and see) that he can do anything he puts his mind to. And I hope the world sees him that way!

As for what I hope Kennett knows about and sees in the world... the good. There’s so much good in the world. So many caring people and people who want to make the world a better place, and I hope that someday he is one of those people that makes a huge difference in the world.

 
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Candyce CarragherComment