Friday, September 18, 2015

Special Needs Spotlight || John Paul





Hi, I’m Jill, mom of 5 boys (ages 10, 8, 6, 5, and 2) and wife of Patrick, who teaches Latin and Literature at a classics-based private school in northern Virginia. Our fifth son is John Paul, who has a type of TAR syndrome, which stands for Thrombocytopenia (low platelets) -Absent-Radius.  In addition to his radius bone, J.P. is also missing joints in his knees, his humerus bones, and some wrist bones. We like to build campfires, watch the Muppet Show, and eat pancakes (sometimes all at the same time). I blog about #theamazingjp and other things much more trivial on my blog dulcedomum.wordpress.com.

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Miggy: Can you take me back to the day you knew your son John Paul, would be born with limb differences? Did you find out at an ultrasound or did you not know until after he was born? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Jill: Like you with Lamp, I found out about John Paul’s short arms at my 20-week ultrasound. It was done in our little county hospital by a technician who was on her first day at the job and had no idea what she was seeing.  I don’t which one of us was more terrified!  Another tech and radiologist were called in to confirm her suspicions that he had no arms, and then I was sent down to UVA hospital in Charlottesville to have further, more comprehensive ultrasound and an amniocentesis.   Nobody there had ever seen this firsthand before. The UVA high-risk OB said she had been practicing for 30 years and had never seen a baby like our baby.

It goes without saying that we were pretty scared of the Unknown. The results of the genetics testing was that J.P. has a deletion on his #1 chromosome, like someone came along and just erased a whole chunk of it. What they found didn’t really fit neatly into any ‘box’, but they suspected that he would have similar symptoms to TAR syndrome.

We turned to our families for support and prayer. We were both raised Catholic and we try to see God’s plan in everything, and we made feeble attempts to make sense of it. Our families were completely amazing and we also received a lot of graces to endure the next few months.  I came to understand that more than anything, our baby would need the love that only WE could give him as his mommy and daddy.  And that brought a lot of peace.

We also found help in an online TAR families support group and in reading books and websites (like this one!), written by people in the special needs community - which was much, much bigger and broader than I imagined!

Looking back, I have to say that there was hardly ANY day in our journey with John Paul that was worse that that day that we found out that our baby would be ‘disabled,’ ‘deformed,’ & ‘different.’




Miggy: Can you educate us a little on John Paul's specific TAR and limb difference diagnosis and how his needs affect your day-to-day life?  

Jill: We were told that TAR syndrome is diagnosed in about 1 in 100,000 people, but the limb differences can vary a lot! Some kids with TAR have almost normal arm length and full-functioning knees. John Paul, however, is missing most of his arms and the joints in his knees. His little hands come right off of his shoulders, and x-rays have shown some kind of modified ulna and wrist connecting them to his shoulder blades.  He’s still small enough that x-rays don’t show all of the developing bones, though, so it’s possible that there’s more there that we can’t see.

When J.P. was very small, we were so focused on his blood disorder that we didn’t really think about his limb differences apart from their appearance.  He was just swaddled up like any other baby, and we carried him everywhere. We didn't know how much he would use his hands or what he would be able to do for himself.  But as he got older and grew, he started surprising us with what he could do: scratch his ear with his toes, feed himself a cracker, make his way from one room to another. Now he gets almost everywhere he wants to go by rolling, or hopping around on his bum. What is lacking in one area is compensated somewhere else. He has an AMAZING core. Any pilates instructor would be envious of his abs. You should see his Flight position.

While he is still small enough to carry around and ride in a stroller, I don’t think day-to-day life is too radically different than having a baby...but then I realize that I’m carrying a 2 year old up and down the stairs, which isn’t what my friends with 2-year olds are doing. He has been using a ‘lender’ power chair with a little joystick rigged up where he can reach it, and even though he is still learning how to steer, he loves having that mobility.  Once he starts using the chair continuously, life will be much different. I’m trying to brace myself for those changes.


Miggy: What are the biggest worries you face for John Paul?  Conversely, what are your hopes and dreams for him?

Jill: My biggest worry is social acceptance once he gets older and is more exposed to the world. I would hope and be so happy for him to have even just one friend that loves and accepts him for who he is. Social cliques and bullying are very real even for the completely normal-looking kids, and have devastating and long-lasting consequences, so of course this is the foremost worry in my mind. I find comfort in the fact that he will always have a sanctuary of friends in his siblings and extended family.

I also worry about his development. He has pretty significant speech delays and of course he is behind his peers in most physical milestones. These aren’t as apparent to me until he is around one of his peers, and then the differences are really discouraging. I know it’s silly to compare him to other 2 1/2 year olds, but it’s hard not to!

Like every mom, I want my children to be happy, to feel safe and secure in who they are and to strive to be and do their best, and to love and be loved. It would also be pretty great if he could learn to play the guitar with his toes. We’re working on it.


Miggy: I know all too well the difficulties that come with having a child with visible differences. How would you like people to approach or respond to John Paul? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Jill: For the most part, people have been really kind to us when we’re out in public. J.P. is a pretty happy, smiley guy, so he usually wins people over before they even have a chance to say something rude. But generally I think people just don’t know WHAT to say or ask, so they just give us a look. I don’t think John Paul is old enough to really notice the difference, yet, and we are 99% of the time around people who know him, love and accept him for who he is. He hasn’t started school yet, but I know it’s right around the corner so it is something I think about more and more.

I think I would just like people to treat him like a person, with kindness and understanding, even though he doesn’t look like them. Sometimes I feel like people see a disability and just focus on that. I don’t necessarily want sympathy from people or for them to dwell on what he is lacking, because I don’t really see John Paul as having something “wrong” with him anymore. We’ve moved beyond that. We’ve accepted it and we’re trying to do the best with what we’ve got. John Paul is so, so much more than what meets the eye, just like each and every one of us! The best and most important things are those which are invisible to the eye.



Miggy:I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to your son?

Jill: More than anything else, the relationships J.P. has with his brothers is the most uplifting and joyful things I experience each and every day. They all accepted him and loved him dearly from the first moment they saw him, and would do anything for him. They each have a unique relationship with him that reflects their individual personalities.  My oldest son, who is a natural leader, likes to make sure he is comfortable and will often change him or feed him without my asking him to. One brother is super affectionate and always has hugs and cuddles for him. Another brother loves to play with Legos and is always building John Paul little cars and trucks to play with. His brother closest in age to him is his best friend, and always shares his snacks or juice box with him. Whatever my expectations and apprehensions were for how our children would adapt or accept John Paul into our family have been absolutely exceeded. It is such a joy to see!



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

Jill: There are a lot more people with special needs than thought. I grew up in pretty privileged, comfortable surroundings, and seeing someone with special needs in the community was a rarity.  In our school, where there was no special needs program, they were almost immediately put to the side, socially ostracized or at least ignored. Sometimes even mocked. Maybe I remember it more harshly than it was, and I’m sure there were exceptions, but we generally weren’t exposed to ‘that world.’

I look back and really regret this. I suppose that the intention of eradicating the world from disabilities is a good and noble one, but it is also futile and has some negative consequences. If there is one thing that John Paul has show me firsthand, even though I already believed it, is that all people have value and have something to contribute to the world. Even the people who can’t eat or talk or walk or breathe by themselves. We need all the people - with all of their disabilities and syndromes and special needs! Our family needed John Paul to be a part of it so much more than he needed us.  He has saved us from ourselves - from only thinking about our own wants and complaints. My husband often says that John Paul was sent to us so that we could learn not to complain.

Life is definitely not rosy all the time. There are lots of difficult days - days that I hide in my closet and polish off a whole bag of peanut butter M&Ms and nights were I lie awake and worry and cry. But even in the midst of all of the pain, I am grateful for it. It is a crazy journey, but we will all be the better for it at the journey’s end.

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Jill that was amazing. You said so many things that really struck a chord with me, like "the best and most important things are those which are invisible to the eye." Yep. Like you I really hope people learn to see past the disability in others and realize that there is so much more to them. And like you I think many of us weren't exposed to "that world" and what a shame. To ever presume that there is a portion of the human race that we should set aside, that we can't learn from or that we are superior to is humanity at it's worst. Like you said, "We need all the people!"  We really do. Thanks so much for sharing your sweet family, and especially your amazing John Paul with us today. 

As always if you or someone you know would like to participate in the special needs spotlight please email me or have them email me at thislittlemiggy at gmail dot com. 

4 comments:

  1. What a sweet smile little JP has! I loved reading about each of your son's relationship with their little brother as I think early sibling bonds have a profound effect on us throughout life. Your family is beautiful, God bless.

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  2. 5 Boys!!!! What a beautiful little boy and gorgeous family x

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  3. Anonymous5:55 PM

    Hi Miggy, I wonder if you can compile all these spotlights into a book? I think it would go a long way toward raising awareness.
    This is Mel in Fort Collins. I don't know any other way to "comment as" other than Anonymous.
    Thank you.

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  4. Anonymous6:30 PM

    Patrick & Jill, and boys...what an absolutely inspiring journey you have shared. Truly, through John Paul, you have shown how God's Will can be honestly sought for and joyfully accepted. Your journey shows the importance of the gift of Faith, the blessing of family, and the treasure of friends. Thank you for sharing your life. Someday we hope to meet ALL of you! In the meantime, we fondly reminisce our life with "...The Storey Boys..." and "their" family!
    Our Love & Prayers & Friendship,
    The Phil & Moira Kuenstle Family

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