My name is Kallie. I was born and raised in the Midwest, and now live with my wonderful husband, charming son (Jahleel), and adorable beagle in the Pacific Northwest region. I have a BA in psychology and have worked as an ABA therapist and a special education aide, but I've been a full-time wife and mom for the past few years. Jahleel keeps me very busy, but I occasionally enjoy choir, playing piano, and small sewing projects. We love to go for walks and visit parks as a family!
Miggy: Welcome Kallie, and thank you so much for being here and for sharing your story and your son with us today. First, can you take me back to the day you knew your son would be born with special needs? Was he diagnosed immediately, or did it take some time? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Kallie: Our story is unique in that we adopted Jahleel from Hong Kong shortly after his second birthday. We did know that we were dealing with some level of special needs – we knew he had a feeding tube, a history of lung issues, low muscle tone, and that he had developmental delays, which appeared to be institutional in nature. One month before we traveled for him, we got a medical update stating that he had a diagnosis of Prader-Willi syndrome (PWS). At that point, we had been waiting for 11 months to get our son. We were scared, but we proceeded and brought him home in spring of 2014. We already loved him as our son, no matter what.
We got the PWS diagnosis confirmed in the U.S. later that year. The next year (2015), we pursued additional genetic testing, and learned that Jahleel’s genetic deletion goes from 15q11.2-14 - more than twice the size of what is typically seen with PWS. He is one of only a couple known cases in the world with this “expanded Prader-Willi syndrome.” After we heard those results, I clearly remember thinking that I should be grieving that news. Instead, it was a tremendous relief. The enormity of that relief still brings tears to my eyes. It was an explanation for why he is so far behind in the PWS world, and assurance that his persistent developmental struggles are not my fault – he is just missing an awful lot of genetic material.
In conclusion, we knew that we would be raising a child with some level of special needs from the very beginning, but the magnitude and complexity of those special needs is something that has been unraveled very slowly over time.
Today, I feel strongly that expanded PWS does not define Jahleel, but it is an integral part of who he is. I can’t hate his diagnosis, because it would be like hating a part of him.
Kallie: Prader-Willi syndrome is caused either by a deletion on the paternal copy of chromosome 15q, or two maternal copies of 15q. It is a multi-phased syndrome. In infancy, babies with PWS have low muscle tone, sleep excessively, and have no appetite. Feeding tubes are commonly needed, and early therapies are crucial to support development. Later in life, the body loses the ability to feel satiated (there is much variety, but this seems to shift sometime around age 6-8, on average) and the individual has “hyperphagia,” or an excessive appetite that is never satisfied. A healthy diet and restricted access to food are necessary. Other complications that commonly occur with PWS include hormone deficiencies, learning disabilities, scoliosis, sleep apnea, and many more.
Jahleel is at the very low end of the spectrum of PWS. He missed out on early therapies during the first two years of his life, and his extra-large deletion makes his hypotonia and delays quite severe. In the PWS world, it is very unusual to be not able to walk or eat by mouth at this age (four and a half years old), but that is our reality.
Our daily lives are very medical, but it’s our normal. Jahleel is 100% dependent on his g-tube for nutrition and hydration, so we hook him up to a feeding pump four times per day. There are also several medications and supplements that he is given through his tube throughout the day. He doesn’t do well on formulas, so I blend all the nutrition he needs for the day in real food (blenderized diet) and split it into four meals. He has obstructive sleep apnea and wears a bipap machine while he sleeps. Jahleel’s sleep schedule is not that of a typical 4-year-old’s; he still sleeps 11-12 hours overnight and naps for 2-3 hours every afternoon. He wears hand splints for several hours per day to keep his thumbs from subluxing, and also wears SMO braces on his feet/ankles when he’s working on standing. My husband or I give him a hormone shot every night. We also spend a considerable amount of time in therapy (5 sessions per week between OT/PT/speech) and doctor’s offices – at last count, he sees 15 doctors covering 17 specialties. Blood draws, x-rays, EEG’s, sleep studies, ultrasounds, surgeries, etc. are regular parts of our life.
For more on PWS, please visit pwsausa.org or fpwr.org.
Kallie: I try to take things day-by-day as much as possible, though I do wonder if he will ever walk, talk, or eat by mouth. In the next few years, if he still isn’thyn walking, things like getting him in and out of his car seat and changing him in public restrooms are concerns – my back already hurts all the time! To be honest, I try not to even think about his teen and adult years right now. There are just too many unknowns at this point. We will cross those bridges when we come to them.
I dream of Jahleel continuing to be as charming, cute, and endearing to others as he is now. I also dream of hearing him say, “Mom,” and, “I love you.”
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?
Kallie: YES! We are big believers in humor as a coping mechanism. Some of the ways we talk about his medical equipment are pretty funny, “Ok, time to hook him up!” (to the feeding pump or bipap). “Can you flush him, please?” (in reference to his g-tube).
We also find ways to make the medically complex life fun, when we can. I dress Jahleel in pajamas for surgery days. He has a couple stuffed animals with g-tubes in them. We buy the cute cloth pads for Jahleel’s g-tube, and we got a personalized sticker for his feeding pump from Etsy. I found a cute little monkey backpack and modified it to be a feeding pump backpack. My husband and I love to “store” his glasses on one of his stuffed animals when he’s not wearing them. We also decorate the IV pole for Christmas-- why not?
Miggy: I know first hand that it can often be difficult having a child with a visible disability--they never fly under the radar! That said, how can people best approach or respond to Jahleel? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Kallie: Jahleel is cute, charming, and engages well with others, so I think he’s pretty approachable as he is. Generally, we don’t mind questions so much as the tone they’re presented with. It’s ok to nicely ask what the tubing is for, or how we knew our toddler needed glasses, or why he wears splints/casts on his hands. I’m happy to share some of our unique needs with others.
However, the one that really bothers me is, “What’s wrong with him?” There’s nothing “wrong” with him. He just happens to have many medical challenges.
We also get the, “Wow, that’s an AMAZING stroller! Where’d you get it?” comment often. Spoiler alert: It’s a medical stroller, also known as a wheelchair. Our insurance covered it (thank goodness). Oh, and using a stroller does not make him a baby. I do get a bit tired of the, “What a cute baby!” comment regarding my four and a half-year-old.
Finally, I want people to know that they shouldn’t feel sorry for our family. Our son is our joy and we are very blessed to have him!
Kallie: There are many, but learning how to speak up, ask questions, and advocate have probably been the biggest ones for me. I am very shy, quiet, and introverted, but in an ironic way, I’ve found my own voice by having to speak for my son. Also, in my faith life, I have learned how to fix my eyes on heaven and focus on things that truly matter. I see the deep value in all human life.
I also have to say that the way that my husband and I have heard the tough diagnoses, and just moved on amazes me. I impress myself with how I manage to get out of the house every day with all the supplies I need to keep Jahleel fed and hydrated, with all the medical skills I’ve acquired, and how I keep track of all his appointments. My point here is not to brag about myself, but to encourage any new special needs parents that might be reading this. You will figure it out. Your own capabilities will surprise you. You may not understand how you do it all, but you will find a way to just do what needs to be done for your child.
Kallie, I love your last answer so much! Yes to learning how to be an advocate--even for those of us who aren't shy and reserved, that is its own skill and something with a pretty steep learning curve! And I love what you said about being impressed with all you do. A) I know you weren't bragging, but you absolutely should be impressed and B) you're right--other newbie special needs families you will find a way, even if it all seems overwhelming and insurmountable right now. Thank you so much Kallie. You know when people say, "special kids go to special families" I've often bristled at that statement because I didn't choose this road. And while I wouldn't change a thing now, I know that if given the option I probably would have opted out--I hate to admit that, but it's true and part of why I do what I do. BUT, when I think of "special kids going to special families" I have often felt that line is most applicable to adoptive special needs families who go into the special needs world with their eyes and hearts wide open. It is an amazing thing. Thanks for sharing your story and your sweet Jahleel with us today. Best of luck to you and your family!
You guys, I am in serious need of some spotlightees! So please if you know anyone have them email me at thislittlemiggy at gmail dot com. Have a great weekend!