Friday, May 19, 2017

Special Needs Spotlight || Kuba

Miggy: Welcome Cydney! So happy to have you here today sharing your beautiful family with us, especially your son Kuba. Let's start at the beginning, can you take me back to the day you knew Kuba would have special needs? Was this in utero, shortly after birth or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Cydney: I had no idea there were any issues while I was pregnant. My pregnancy was normal--I felt great, and even rock climbed through my 8th month of pregnancy! Birth was normal and there were no indications that anything was wrong until after Kuba was born. Early feeding issues, and abnormal blood tests sent us to the NICU for his first two weeks where they ran the whole gamut of tests. A week after we came home, we found out that Kuba had a genetic mutation--triplication of 1p36.31-33. This was incredibly rare, and they couldn't give us any information about it. This entire journey was very tumultuous. All the time we were in the NICU, my husband and I took turns googling the newest disorder the doctor was testing for and became overwhelmed with grief for what it could mean. It was a complete roller coaster.

About a month after our diagnosis, I got a call from Kindering, our local early intervention program, asking if we'd like to come in for a consult. When the caller explained that Kindering was a birth-3 program for children with special needs, I became very angry and said that my son did not have special needs and that we would not be needing their services thank-you-very-much. Needless to say, this was a big pill for me to swallow. I was angry and hurt for quite some time and my husband and I both had a really hard time talking about it. I felt cheated and betrayed. Not to mention that I felt guilty, wondering if it was something that I did while pregnant despite assurances from the doctor that this was not the case.

It has been a long road, but I have found peace, healing and acceptance--ironically through Kindering, They did such a great job holding my hand through those tender first years. In addition, my saving grace was finding a local group of special needs mamas on Facebook. Besides being a WEALTH of information and resources, these moms get together twice a month for mom's night out. It has completely changed my perspective and feelings about having a child with special needs, and gave me a community that could understand what I was feeling.

Miggy: Your son has a very rare disorder, could you educate us about this disorder and explain about Kuba's needs and how they affect your family’s day-to-day life?

Cydney: Kuba has a triplication of 1p36.31-33. What that means is that on chromosome 1, the p-arm, band 36--he has three of genes 31 and 33 instead of just one. My husband and I were both tested for the same mutation and we were both negative, so they conclude that this was a spontaneous mutation during development. When meeting with the geneticist, we were told that there are no documented cases of a 1p36 duplication, let alone triplication. I have since found a small but growing Facebook support group with moms of 1p36 duplication kiddos, so we been able to connect, compare notes and try and gather data--hoping to get recognized. I am actually working on trying to find someone at UW to take Kuba on as a research project.


As this is an unknown condition, in the geneticist's words, "Kuba will write his own story." So far, we have seen that Kuba has global delays in every area. It takes him an incredibly long time to learn things. At 3 years old, he is developmentally at 12 months. He is just now learning to walk on his own, he is non-verbal, though babbles quite a bit and will say "Hi" to anyone he sees (including himself in the mirror). In the past three months, he just figured out how to chew foods--before that he relied on Pediasure and purees for his nutritional needs. His attention span is that of a 9 month old, and he has motor planning challenges. Anything we teach him has to be done with a lot of patience and repetition. In the past year, he has started having absence seizures--at worst, I counted 40 in one hour. They are controlled by medication, but still create a lot of background "noise" in his brain, which contributes to his challenges in learning. Kuba has a 14-month old sister, Magda, so needless to say that this makes for a busy life for us! I consider myself a mother of twins--as they are developmentally at the same stage. Our day is packed--between Kuba's developmental preschool and crazy therapy schedule, I am easily driving 300 miles per week. Playdates are few and far between, and the potential for mom-burnout is high. But seeing the amazing progress that he has made in the last five months since we started this crazy schedule has made it all worth it!

Miggy: What are the biggest worries you face for your Kuba? On the flip side, what are your hopes and dreams for him?

Cydney: My worries...oh my worries...where to begin? A few months ago I had a severe anxiety attack that landed me in the ER thinking I was having a heart attack. A friend of mine had a wife that passed away suddenly and it completely rocked me. I began to worry about what would happen if I died--I was breastfeeding a new baby and Kuba had seizure meds that were always changing, and he had a crazy schedule, and I was the only one who knew every little detail of how many calories he needed to eat every day and... oh....thoughts and feelings and fears. After my ER visit showed my heart was fine, my sisters and husband had to talk me down and assure me that between them all, my kids would be well cared for. Of course my biggest fear for the future is the unknown. Not knowing what our future will hold. I find myself watching groups of teenagers together flirting, or boys talking about video games, or on dates and wonder if Kuba will ever get to experience those things. I worry about bullying...knowing that while right now Kuba's growling and hat/glasses obsessions are funny and cute, they might not be when he is twelve. I worry about Kuba getting older and wanting to live on his own but not understanding that he lacks the skills to successfully live on his own. I worry about how that responsibility will be on Magda's shoulders after my husband and I are gone, and should we have a third child so she can share that responsibility but seriously, I'm almost 40 and I'm swimming with my head barely above water how can I possibly have another child right now??

And then there is this sweet tender mercy I had the other day at Home Depot. Kuba LOVES going to Home Depot. One time I took him there to practice walking in his walker, and he was strolling down the aisles smiling at everyone and making everyone happy--seriously, everyone who passed us made some comment about him. I had a beautiful moment where I could picture him as an adult working at Home Depot, greeting everyone and making them smile. I couldn't ask for more than to have my boy bring joy to others through his infectious smile and sweet spirit. My hopes and dreams for Kuba is that he is HAPPY and that he makes others HAPPY.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations? 

Cydney: My husband and I joke that Kuba has a triplication of the cuteness gene, because this kid is so. stinking. cute. Yes, I'm totally biased, but it's true. I don't know that I have a particular moment that made me chuckle, but Kuba makes us laugh every day--he has quite a developed sense of humor. He is obsessed with hats and sunglasses. EVERYTHING is a hat. If he sees a bin of toys, he'll dump out the toys and put the bin on his head. His favorite hats are strainers because they have a nice handle. One time he spent an entire Target shopping trip with a plastic bin on his head. It was just big enough to completely cover his head, but still showed his neck and shoulders. It had holes in it so he could see through--he looked like a robot. People would walk by and just laugh out loud. He's hilarious and he knows it. He has the most expressive eyebrows and will look at you with his head cocked, a mischievous grin on his face, and one eyebrow raised as if to say..."you know I'm hilarious, right?"

Miggy: How can people best approach or respond to Kuba? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Cydney: Kuba is very approachable and easy for adults to connect with. In fact, he is hard to ignore. My favorite thing to watch is when I'm at the checkout line at the grocery store, he will cock his head to the side and stare intently at the cashier until they look at him and acknowledge him. He responds with the biggest, sweetest smile! When he looks at you, he SEES you--like sees into your soul sees you. While adults find this impressive, it seems to make other children uncomfortable. My biggest challenge lately for me is to figure out how children his age can interact with him. They see him as a peer, but quickly notice that he does not act appropriately for his age. His way of interacting with peers is to screech excitedly in their face and grab their arm, or hair, or whatever is in grabbing vicinity. He grunts and growls and babbles and walks like a drunken sailor. When he loses balance he will lurch at whoever is closest to him, which can be alarming to another little three year old. I personally appreciate when parents are open and ask me questions about Kuba rather than quietly shush their kids when they ask pointed questions about why he acts the way he does. I had a mom at church the other day ask me how I should describe Kuba's challenges to her young daughters who were taken aback with his odd behaviors. I really appreciated this and it has made me start thinking about what I should say to explain his challenges to other kids. I don't like to treat Kuba's disability as something to be ashamed of or embarrassed by, so I try to be very open with people about it since it is very obvious when you meet him.

Miggy: I've often reflected on our journey and how I viewed disability before we became a special needs family. Are there some ideas you had about having a child with special needs that have since changed now that you have Kuba?


Cydney: I remember an incident that happened when my husband and I were engaged, and I personally believe that it has stayed with me for a reason. My husband Bartek and I are adventurers. We always pictured ourselves as an old retired couple taking to the road to climb or go adventure around the world. I remember one evening after a day spent back country snowboarding, we went to a restaurant for dinner. We saw an older, glum, exhausted-looking couple in their 70's sitting with a man in his 50's who had a very apparent intellectual disability. They looked so tired and worn out. Bartek and I looked at each other and didn't say anything. But I know what we were both thinking--that this situation was unfathomable for the both of us and seemed like the worst thing that could happen. I FEARED having a child with a disability more than anything. I know this is why it was so hard to accept initially--we were living out our greatest fear. I saw disability as something that limited you, that brought sorrow and heartbreak. I had no idea that with all the sorrow and heartbreak--because believe me, there is PLENTY--there are equal parts JOY and REJOICING! I am so blessed! Now as I look to the future and realize that Kuba will likely still be with us in our 70's I don't face that with fear and dread. While we face many challenges, Kuba brings SO MUCH JOY. Bartek and I have changed so much and I can't imagine life without Kuba the way that he is and I'm sure that couple felt the same way about their son. Our future will be what we make of it. Kuba will make an excellent traveling companion!

Miggy: What is the biggest lesson you’ve learned since becoming Kuba's mom?

Cydney: I have learned to celebrate and find joy in the little things. A common joke among special needs moms is that we are the ONLY moms out there who rejoice when our kids throw their first toddler tantrum or do their first naughty deed. We don't celebrate milestones, we celebrate inchstones... I have been able to see just how much work goes into every single thing that these tiny humans do in their growth and development. This has been such a blessing as I've been raising Magda. I feel like I am able to appreciate everything she does so much more, and to see it for the miracle that it is! Kuba forces me to slow down, simplify my life, and appreciate the small things.

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"We don't celebrate milestones, we celebrate inchstones." I love that Cydney. It is so true. And it is pretty great to celebrate these inchstones for the huge accomplishments they are. I also appreciate your candor about your fears of having a child with special needs. Yes, it is hard (and I will say that not all special needs situations are created equal--some are harder and more taxing than others) but yes there are equal parts JOY and REJOICING. The love is the same. I often feel like when I write I try to speak to my former self--to the person who, like you, would have never wanted a child with special needs. The person who equated disability with pity. I speak to so much to that idea, because I know what that fear is like. Which is why it's so important to preach not the things that we once feared, but the things we now KNOW. Thank you so much for sharing your thoughts, your heart and your family with us. I think you're right, Kuba will be an excellent travelling companion. Please give him and his sister a big hug from me. 

I have so many great spotlights coming up I'm so excited! But I'm always, always looking for more. So if you or someone you know would like to be a part of the special needs spotlight series please email me at thislittlemiggy at gmail dot com. 

Have a fantastic weekend!
XO, 
Miggy

1 comment:

  1. Lovely thoughts and insights here, thank you. And oh my word, that picture of them dressed as old folks? Made my day.

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