This week for my new Wondrous Wednesdays series, I'm interviewing Jeanie from Reinventing Mommy. Stop by her blog and say hi!
I'm Jeanie and I primarily write at my blog Reinventing Mommy (http://reinventingmommy.
blogspot.com), but I have also a frequent contributor to the SPD Blogger Network and Hopeful Parents. I'm also syndicated on Autisable and have been syndicated on BlogHer.
I am a 30-something freelance writer and stay-at-home mom to the star of my blog - and everything else I do - Jack. Jack is a 4.5-year old sweetheart of a boy who has autism and what I like to call an "alphabet soup" of diagnoses and special needs (meaning there are too many to name!). I've been married to my husband Brian for 7 years, and our family also includes Mason, a 15-year old Pug with a heart for special needs kids like his boy. We live in the Atlanta area.
Before Jack was born, I was a Quality Engineer in the medical device/transplant industry with a background in biology and genetics. Once Jack was born and began to have problems keeping food down, I left my job for what I thought would be a temporary interlude into stay-at-home parenting until we sorted the feeding issues out. 4.5 years later, they still aren't sorted out and we have added a plethora of other issues to the "sort out" list, so I'm learning to embrace the new direction my life has taken.
What is your biggest challenge with your son’s disability?
People are always surprised when I tell them what our greatest challenge is right now. Some might think it would be communication since Jack is severely speech delayed, but we anticipate his needs and read his behavior so well that words aren't always needed. Others might say motor skills, which keeps Jack dependent on us for many things, but we are just used to that aspect of caring for Jack.
I would say that our biggest challenge is a toss-up between feeding and sensory processing challenges. With feeding, we constantly worry about whether or not Jack is eating enough (he weighs 32 lbs. at 4.5 years old) and whether or not he will choke. He has dysphagia - a chewing and swallowing disorder - on top of his SPD, which makes feeding Jack safely without stressing him out a real challenge. With his SPD, I wish that I could help him feel more comfortable and at ease in his world. Unfortunately, I cannot control all sensory input out there in the world, and it's hard to see your child feel so fearful of the world and the unknown.
What is the greatest gift from your son’s disability?
Compassion. Being Jack's mom has opened my eyes to the wonderful diversity of abilities in our community. Jack has shown me that every single person I encounter has value. Jack has also taught me gratitude, because each and every little milestone achieved or lesson learned was hard fought for and well deserved by him. I am grateful for the little milestones that people miss, like the first time he dances to a song or the first time his arms wrapped around my neck during a hug. I'm grateful that I noticed and appreciate those milestones, because it's all precious.
Beyond that, being a special needs mom has introduced me to some of the greatest people I have ever had the privilege to meet - from fellow special needs parents, to teachers and para-pros, to therapists and coordinators and everyone else who works with our children. They have some of the biggest hearts of anyone you'll ever meet, and it has been an honor to share this journey with them.
What’s one thing you want people to know about your son’s disability that many don’t seem to understand?
I think many people see autism is a diagnosis of "can't dos." I hear often that children with autism can't make eye contact, or that children with autism can't speak. I've heard that autistic children can't read or can't love. For all of those, "can't dos" that people list, I can't think of a single one that is an absolute for our children. I want people to see autism for all of the "can dos" - like how my child can finally speak, and how he can see things in a completely different and unique way from the rest of us. My son can make eye contact - just not consistently or for more than a fleeting moment - but he can do it. When people tell me that children with autism can't make eye contact, I tell them that mine can, and there are many, many other things he can do, too.
|Jeanie and her son Jack|
If you could magically make your child’s disability disappear or have a totally different child, would you?
Honestly, I have a unique perspective on this and wrote an entire post on this subject called "Would You?" I lost a baby in the second trimester and doctors attributed her passing to a likely trisomy or monosomy, but then I also have a living child with a disability as well. Would I cure my living child? I don't think so. I believe it would make him a completely different person than the child I have come to love if I were to do so. What I do wish I could do is alleviate his challenges, but I would not take away the fundamentally unique way in which he sees the world.
As for the baby I lost, I say all the time that if I could have magically taken away that extra chromosome so that my baby would live, I would do so. I never got the opportunity to get to know her like I know my Jack and I would absolutely cure her of her disabilities if it meant that I had the chance to get to know her instead of mourning her loss.
So, I think the concept of "cure" is complicated. I wouldn't cure my son of his disabilities because they have made him the wonderful little boy I know and love, but my daughter - whose disabilities took away her opportunity to live - I would cure in a second.
What has been the best part of maintaining a blog?
The best part of maintaining my blog and Facebook page has been the sense of community I felt in doing so. I'm in a very different place now - acceptance wise - than I was when Jack was diagnosed, and that is in large part to the community that helped support me along the way. I am so glad to be a part of the daily experiences of some parents who are new to this process, and I hope that my words give them comfort just as the words of others comforted me. I pray that those new families just receiving a diagnosis will read my blog and feel that they are understood and not alone.
What is a typical day like in your life?
It's messy. It's busy. We cram school - Jack is in a full-day preschool special education program - and therapy and all of the regular things a family needs to do in our day, but we have to build in extra time for meltdowns (they happen!) and helping Jack work through issues that arise and understanding what's going on. However, after 4.5 years of raising Jack, we don't have the system perfect, but we manage and take things in stride. We understand that there will be struggles, but we try not to let it define our days.
And - of course - every day starts with coffee. Lots and lots of coffee.
What’s your favorite pastime?
Besides writing? Running was my favorite past-time - I love running 10Ks and was training for a half-marathon - but then I got injured and once I was healed I got pregnant. I haven't started running again since the baby passed away, but I hope to get back to running when the time is right.
I am also an avid reader and always have been. 've always got a book or two I'm working on at the moment.
What’s your favorite food/drink?
Chinese food and sushi - hands down. I could eat it every day, though the Hubs is disgusted by sushi so I try to limit it. We all have our sensory issues, I guess!
I'm a big coffee drinker, but I'm not as particular about coffee. For medical reasons, I have to drink decaf, but I think all decaf tastes about the same (not as good as the real stuff). I also LOVE tea, which usually has less caffeine, so I can get away with it. Just like Patrick Stewart of Star Trek: The Next Generation fame, I love Earl Grey tea.
I also won't turn down a good Reisling.
Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?
One of my favorite quotes comes from Carl Sagan's book Contact, and I think it speaks well to the special needs community, particularly what it is like in the early days after a diagnosis. I always felt comfort in these words...
"You feel so cut off, so lost, so alone, only you're not. See, in all our searching, the only thing we've found that makes the emptiness bearable is each other."
And he's right. In the wake of a diagnosis, you'll find solace in the support of others. Don't feel like you have to walk this journey alone, because you don't. There are plenty of us here for you.
Would you like to recommend other bloggers my readers would be interested in reading?
The blogger that got me through those early days was Jess from Diary of a Mom. I'd recommend her earlier blog posts to anyone who is just starting this journey.
As for a good compilation of different perspectives on various disabilities, check out Hopeful Parents (http://www.hopefulparents.org