Special Needs Spotlight Then + Now || Julianna, Blake + Nathan

Hey guys, Miggy here! I have another fantastic Spotlight Then + Now update for you today. I first shared Kera and her 3 children back in 2013–it’s been 5 years! I’m excited to have Kera back today sharing how her kids are doing now, as well as how her personal journey has evolved in the past 5 years. (Hint: a lot.) You can read the original spotlight here. Enjoy!
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Miggy: Welcome back Kera! First, let’s start with a brief overview of your children Julianna, Blake and Nathan, your 3 beautiful redheads! What are their diagnosis and how does these diagnosis and/or conditions specifically manifest in your kids?

Kera: Julianna is 15 now, and has been diagnosed with autism and intellectual disability. She is going to high school in the fall! She tries her best to be social and loves to say hi to her friends and give them a little side hug. She is aware that she has autism now, which is actually tough for her–she doesn’t want to be different or have the struggles that she does. We are working to help her through this and to give her as many opportunities as she can to reach her potential.

Blake is 12 now and was born with a rare blood disorder called mastocytosis, but honestly, it’s not even an issue at this point. He did get his tonsils and adenoids removed last fall–his first surgery! Otherwise, he is a smart, social kid and loves chess, Rubik’s cubes, making stop motion videos, basketball and baseball, and playing Minecraft.

Nathan is 6 now and almost done with kindergarten. In the last post, he had just had his palate repair surgery just a few months prior. Since then, he has continued to receive medical care as he grows, and is doing really great! Speech therapy has been a huge help for him to improve his articulation. He still has his tiny “fistula” or hole in his palate that never fully healed, but it doesn’t cause any problems from him. He’s had a few set of PE tubes to allow for drainage in his ears, and as a result, has perforated ear drums in both ears and some mild hearing loss. After some careful advocating on my part, I was able to get him his own FM system in the classroom and he is hearing the teacher better and responding so well!

Miggy: What has changed the most for you personally about your identity as a special needs parent? For example, have your general views on disability evolved, does your care-taking look different than it used to, and/or do you feel more or less personally balanced than you used to?

Kera: I have come such a long way in 5 1/2 years. I really feel like I have accepted this role as a mom to children with unique needs. I have realized how important it is to identify myself as a caregiver, because what I do is so much more than typical parents do for their children, and there is a good chance I will be caring for my daughter long-term (though we still hope she will be able to become independent someday). After writing my first spotlight post 5 1/2 years ago and receiving such wonderful feedback from your readers, I actually revamped my blog–before, I was just talking about the day-to-day, regular things, but I decided I shouldn’t hide what I face on a regular basis. So I started writing more openly about my experiences, and this led to creating a facebook page, and even being published on several platforms. I began to see that my voice matters, and that by sharing my experiences as a special needs parent, I could not only allow myself to heal, but I could help other parents connect and heal. So I have you to thank for starting me on my journey! Here are some links to some of my more popular posts:

I also decided to go back to college after writing for a couple of years–and in the end, I chose speech and language pathology. Seeing my youngest improve his speech so dramatically got me interested, and when he started preschool, I started my 2nd bachelor’s in communicative disorders. I was lucky enough to be accepted to a graduate program in speech and language pathology and just finished my second semester! I am so grateful to be learning about speech and language at a higher level–it’s helping me to understand my own kids better! And when I finish, I will get to help more kids and families just like mine, and I can’t wait! I know that I was led to this field of study and that with my unique experiences as a parent, I will be able to empathize with other parents and families in a very special way.

Miggy: I’m curious to know if you have noticed a shift in the relationships or dynamics in your family over the years as well that might be directly or indirectly affected by your special needs situation? For example, sibling resentment, marital challenges or perhaps the ties are stronger than ever?

Kera: I would say the biggest thing about the dynamic of our family that has changed is there is more understanding and acceptance around autism, birth defects, and disability as a whole. Julianna, now that she is aware of her diagnosis, does not like others to talk about it, even in the family. I have to think that maybe she is going through this phase because she is trying to accept who she is. My youngest has been very sensitive to that, and there are moments where he wants to ask me a question about why Julianna might be behaving in a certain way, but he knows she will get upset if he asks me where she can hear the conversation. So what he does is if he ever has something on his mind, he will give me this look, and we will go into another room and talk quietly about what he wants to understand more, or sometimes it’s when I’m putting him to bed that something will come to his mind. I love these little talks, because I know that because he is growing up in this family, he is learning about differences and what it means to make accommodations and to be accepting of others no matter what. I hope that these little conversations will serve him well in the future!

My older son has had somewhat of a difficult time in the last couple of years as well, and we have had many talks. I think even in a family, every member has to go through their own phases that will lead to acceptance and finally advocating. For this and many other reasons, I have nothing but admiration for Julianna’s siblings and what they do to help her be happy.

Miggy: I still it important to find humor in our daily lives and LOVE hearing all the funny anecdotes related to disability–anything recent funny stories you’d like to share?

Kera: You know, I just got through a very stressful semester, so I’m having a hard time finding humor! But those times where we all get to laugh as a family are the best! I don’t think we do it enough, so when we do, it really does lighten everyone’s moods! This does not relate to disability at all, but my youngest, Nathan, just the other day, learned how to do “armpit farts” and we all had the best time watching him learn it and were laughing together. Julianna still says “I love you” to me about every 10 minutes, and has for about 8 years, so I have to find the humor in that–hearing “I love you” repeatedly DOES get old after a while, trust me! Life can be very overbearing and stressful when you face daily challenges so finding time to laugh and enjoy being together is so important.

Miggy: It’s really hard to see the lessons we’re being taught when we’re in the thick of it–often we need time to give us perspective we don’t initially have. So what do you feel like you’ve learned in the past few years that perhaps you didn’t see at first?

Kera: The lesson I keep learning, time and again, is to be prayerful and trust that God has a plan for our family. I know this is religious, but it’s what I truly believe. Sometimes I have moments where it suddenly hits me–I have been through so much as a mom! And I sit in wonder, thinking about all the problems I have had to solve or the questions I’ve needed answered for each of my kids, and there’s no denying that I could never have done this alone. God is watching out for my family, and he is watching over me as a mom. He has led me to the right people and the right help, every single time. Before I had my children, I knew nothing about disabilities or birth defects or blood disorders and that being a mom would mean I would be navigating very confusing terrain just to get answers and help. But that’s what happened, and with God’s help, I have made it this far. I have to believe that, even though I don’t have the answers to what lies in the future for my daughter, that the answers will be there when I need them, because that is the pattern in my life, time and again. Prayer works, and trusting God works. He has paved the way for me on this journey of motherhood and given me the tools I’ve needed, and he will continue to do so as long as I remain faithful.

I’ve also realized that when you have children with special needs, you are constantly living outside your comfort zone. Most things usually aren’t easy and take a lot more planning just to happen, like a vacation or a simple trip to the store. You have to continually think outside the box to reach solutions, and when you are advocating for your kids, you have to become tougher and stronger than maybe you’d want to be, because you’d do anything for your kids. I am getting used to being outside of my comfort zone and also being okay with it. I think that’s why I decided to further my education–just one more step into the unknown but also trusting that this opportunity was just one more step on the path I am supposed to take. It’s not comfortable or easy, but nothing has been for me, so why not try? I have nothing to lose.

One other big thing I’ve learned about recently is the importance of self-care as a special needs parent. For my church, I was asked to serve as a disability specialist. This has allowed me to learn so much more about how to spread awareness and to educate those within our immediate area about disability in general, and also how important it is for those who are caregivers to be healthy. We started a caregiver support group and meet monthly to discuss topics related to caregiving. When we talked about caregiver burnout, it really make me stop and think–am I doing enough to take care of myself? Am I getting enough time away to gain respite and relief from the many challenges I face? This is so, so important to do in order to be the best parent and caregiver I possibly can be. The support group is so great because, as many special needs parents know, it is a very isolating journey. It’s so hard to find people who can relate to your situation and who are willing to listen to your struggles and actually understand them. I find it gets harder when your child is in the teen years, because everything becomes so focused on social activities, and when you have a child who struggles socially, well, they can be forgotten at times–it’s just a fact! But the amazing thing is, my daughter wants to do all the things her peers do and has NO fear! She knows she has limitations but that doesn’t stop her from wanting to go to EVERYTHING, so once again, I’m the one who has to step outside my comfort zone, probably way more than I want to, as I help her attend certain events. I’m so glad she is brave!

Miggy: Lastly, is there anything else you’d like to add about identity, family or your views in general as they relate to disability?

Kera: I feel like my perspective has changed drastically since my post just 5 1/2 years ago! I only hope that my perspective will continue to grow in the years ahead! And as for disability in general, yes, I’m still scared sometimes. I still cry when I see my daughter being ignored, or when she struggles to communicate with her peers. I still worry about my youngest who is already feeling stigmatized in his classroom because he has to wear headphones to hear better. I worry about my older son and whether his experiences in this family have been too traumatic, or if they are going to make him stronger in the end. But I don’t worry alone anymore–I think that’s the difference. Sharing on my Facebook page or my blog or with others–being brave enough to say, this is my life and I’m proud of it, this also helps me to move forward in my journey, and I have to hope that it helps others, too. My kids have given me a whole new outlook on life and I will forever be grateful! You can also see more publications on my blog here, and check out my FB page here.

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Kera, thank you again for giving this update on your wonderful family. I appreciate your honesty in admitting you still have fears (don’t we all?) but I love your comment that “you don’t worry alone anymore.” That really does make a huge difference doesn’t it? For all the issues and concerns that come with social media and the digital age, we can’t deny that there are some amazing benefits that come with being able to connect so easily with people all over the world. As special needs parents we are so fortunate to live in this age of connection. Lastly, I really love what you had to say about self-care and caregiver burnout. I think a lot of us can do it full steam ahead for a short while–I don’t know how I managed our first few years of doctors appointments, therapy, specialists, brace/prosthetics, etc–but if you have on-going intense care you need to be more vigilant about stepping away from time to time. I’m so glad to see that overall your family is doing well and please give them all a big hug/high five from me (their choice!).

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com.

Have a fantastic weekend! Happy Mother’s Day to all the amazing women out there.
XO,
Miggy