Friday, May 06, 2016

Special Needs Spotlight || Tallulah


Hi, my name is Erin. I married my high school sweet heart, Peter, seven years ago and we have three children: Rhonin, 4, and identical twin girls Ellorah and Tallulah, 2. Our family loves being outdoors on bike rides, family walks, kayaking, beach days (surfing for the kids coming soon!), playing at the park, etc., so luckily we live in sunny Southern California and we are able to spend most of our days in the sunshine. Our girls were born 8 weeks premature due to late stage Twin to Twin Transfusion Syndrome (TTTS). Tallulah had to be resuscitated and placed on oxygen for two days. At two weeks old, we were told Tallulah had suffered a small bit of brain damage and a grade one brain bleed, and that doctor told us that this WOULD lead to some form of cerebral palsy. Now, at two years old, she sees a neurologist and goes to occupational and physical therapy but she has not been formally diagnosed with a particular disability. The damage to the left side of her brain has affected her fine and gross motor skills on the right side of her body (very similar to a stroke, which is still up in the air as a possible cause of damage).

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Miggy: Hi Erin, thank you so much for being here today and sharing your story and especially your sweet family with us. Your daughter Tallulah, who is also a twin, was only two weeks old when you were told that she has suffered a small bit of brain damage as well as some bleeding. What did that moment feel like? Tallulah is now 19 months old, can you compare those first thoughts and feelings with how you feel now?

Erin: It was our nightly visit to the NICU (the girls were there for a month, and Tallulah came home two days before her sister), the doctor came in and sat down, and at that second I knew they found something on the brain ultrasound that we weren't going to want to hear. My husband was holding Ellorah and Tallulah was sleeping peacefully on my chest. After he gave us all the information and we asked our questions I just said while rubbing her back, "Well, at least she is here." I didn't cry in front of the doctor or nurses, which isn't like me. We left, and were quietly walking to the car holding hands in silence, my husband said something, and I broke. I was so scared for this tiny human that should have still been warm and safe in my belly, and now we are being told she may never walk! I cried. My husband cried. Our family had been through so much in the last few months, and now we look to our future with fear and uncertainty.

At 19 months she took her first few steps on her own, and at 23 months she decided she wanted to kick it into high gear and make this walking thing her regular business! We are so proud. And more importantly, we can see how proud she is of herself. Watching Tallulah now, I still have some worries, but I can look to the future and see her running at the park with her siblings, grabbing branches to climb trees, dancing, playing an instrument, and so much more!

Miggy: It is thought that your daughter might have CP, but she also might not. Can you tell us about her current needs and how they affect your day-to-day life?
  
Erin: She just started regularly walking about a month ago. Since she just started, it takes a little longer to get places. It can be difficult at times because her brother and twin sister sometimes take off too quickly, then I have to pick Tallulah up and run after them, but she is throwing a fit flailing in my arms because she wants to walk; it's fun. Her biggest need is working with her right hand. We have to do stretches with the hand, arm, and shoulder. She tends to keep her hand in a fist when she is concentrating, for example while walking or using utensils. Tasks that are simple for others she can do, but she really has to think about how to control the right side of her body to perform the task, such as giving a hug or holding a cup. We are also working on her speech, which she has recently come along way with, but it hasn't been determined if the slight delay is due to her brain or the prematurity.

                                                                                                  
Miggy: Granted Tallulah is only 2 years old, and the whole picture is still coming into focus, but what are the biggest worries you face for your daughter? On the contrary, what are your hopes and dreams for Tallulah?

Erin: I would say my biggest worry for her is that she is an identical twin who has different needs than her sister. While we know that they are two different people developing, society tends to think of twins as being the same. I am so scared of the comparisons they will both receive, especially Tallulah. People already compare and ask questions, such as "Why isn't she crawling/walking?" "She doesn't talk as well." One person even said (without knowing that she had any sort of delay) "We'll just assume Ellorah is the smarter twin." This comment killed me! I think toward when they go to school and wonder, "Will Tallulah need any special education?" "How will classroom physical activities be carried out for her? Will she need modification?" "How will Ellorah treat her sister? Or will she stand up for her if the time ever arises?"

On the contrary, we have been told by her therapists and neurologist that they predict, in their crystal ball, that Tallulah will be able to do everything Ellorah and other children can do we just might have to spend some time at therapy working on certain skills. I hope that Tallulah always feels supported in her goals and activities she wants to be a part of. I hope she can understand how much she has accomplished in just two years of life and she can use that as a platform to accomplish any goal she sets her heart on.


Miggy: How can people best approach or respond to Tallulah and your family at this time? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Erin: I would love for people to avoid trying to compare my twins. Special needs or not, they are two different people! There are milestones Ellorah has hit first and some that Tallulah did first. Just because Tallulah has to concentrate a little more on certain tasks doesn't mean she can't accomplish a goal before her sister. And most definitely, don't call one smarter than the other! I am very open to explaining why Tallulah looks a little different walking or why her hand opens like a claw sometimes, so rather than making a joke about my child, just ask. And if a person does comment, be prepared for me to explain why and don't brush me off as if it is difficult for me to explain.


Miggy: What is the biggest lesson you’ve learned since becoming Tallulah's mom?
Erin: The funniest thing Tallulah has taught me is how difficult I AM to deal with because I can be so stubborn! That little girl is my personality twin, and has been since the womb. The two of us have had some crazy power battles; I am almost scared for the teenage years! I always thought I was a patient person, especially with children, but Tallulah has taught me there is more patience to acquire! There are times I just want to get things done or get somewhere fast, so I try to carry her so we can go faster. Then, she cries because she actually WANTS to walk, and that is the moment I have to stop, slow down, and patiently walk with her. I think she is teaching her siblings patience too because they are usually pretty good about walking with us or waiting for her. I have also learned that doctors are human too. They can predict the future as well as I can. Sure they might have a little more insight on her condition based on other people they have worked with, but my husband and I need to make our own decisions about the treatment and future of our children. We were told by a doctor that our daughter may never walk, but she is, and before we know it she will be running away from us!

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Erin thank you so much for sharing your story and you sweet girls with us today. It is heart wrenching to receive 'bad news' about your baby and to be told what they won't do. But yes, doctors are people too and are often just making educated guesses--well educated guesses mind you, but people and babies and children are so much more than a diagnosis aren't they? And yes to treating people--even twins gasp!--as individuals and to NEVER telling someone that one of their girls is smart than the other. Thanks again and best to you and your beautiful family!

You guys I am in need of more spotlightees! So if you or anyone you know are interested in sharing your story please email me directly at thislittlemiggy at gmail dot com.

Have a great weekend!
XO
Miggy


2 comments:

  1. What a beautiful family. I would love to hear about Tallulah again in about 5 years; I have a feeling she's going to be doing just fine. Love the twinkle in her eye :)

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  2. What beautiful kids and I love their names :)

    ReplyDelete