Friday, September 04, 2015

Special Needs Spotlight || Elsie



My family and I live on a 5 acre farm in Idaho. I like to call it the fix-it-up-farm because that is just what it is!  We bought it as a bank property that was not taken care of and we have been working non-stop to make it our dream place for the past almost 4 years. We love it here! My husband is a Boise Firefighter and I am a stay-at-home mom who loves art/photography/and doing DIY stuff with my hubby. My husband and I have 4 amazing children. Our daughter Elsie, 9 years old, has Cerebral Palsy. She is high functioning, but still has many struggles in her daily life. One thing about Elsie that anyone who knows her would say, she LOVES Buffalos! The obsession started when we went to Yellowstone when she was about 4.  When we talk about her doing hard things we say she is 'Buffalo Brave'. We love being a family and feel overwhelmed with joy that Elsie is a part of it! If you would like to read Elsie's story I wrote it all out several years ago on our family blog. It is a private blog, but for this #specialneedsspotlight, in hopes to connect with some other Moms who may be going through similar situations as me, I have made it public and will leave it like that for a week or so. Elsie's story can be found here.


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Miggy: Hi Kim! Thanks so much for being here today to talk about your sweet daughter Elsie. First can you take me back to the day Elsie was diagnosed with cerebral palsy? Was this during an ultrasound, shortly after birth or sometime later? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?
Kim: It took a long time to finally get to the diagnosis point. At 11 months old, still not able to sit up, or really even hold her head up very well, I knew we needed to find out more about what was going on. Elsie was like a rag doll, but then also very stiff--a weird combo. I just knew that they were wrong when they told me she was just slow to catch up. We finally switched pediatricians, and that is when we got the ball rolling. She was 14 months old when we finally got her diagnosis of Cerebral Palsy. We were scared. We had no clue what that diagnosis meant. We didn't know what she could do or could not do… we wanted the best for her and we needed help. I won't lie, it is still scary now. Am I doing my best to give her the best chance to be what she wants in life? We know more now what things are harder for her but she has amazed us with what she has been able to do in her few short years in life. She is a remarkable, and very stubborn, little girl :)

Miggy: I know CP is a broad umbrella and can vary widely from child to child.  Can you tell us specifically about Elsie and how her needs affect your and her day-to-day life?  How has this changed over the years--or has it?
Kim: Elsie has always amazed us with her sunshine personality. It has been amazing to watch her go from not knowing if she would ever walk on her own, to walking with a walker, and now on her own. She got so good walking with her walker that she would run and lift the walker so she could go faster, always with a huge smile on her face. She was done with the walker when she was 5, and is now 9. She still has balance issues.   She will fall, but always gets back up.  She also startles very easily. Which contributes to a lot of her falls. Her CP mostly affects her legs. But she also has troubles with writing, and her speech is affected as well. I like to tell people to tighten all the muscles in their body for about 5 minutes, holding tight the whole time, and then imagine doing that all day everyday. That would be exhausting! That is what it is like for Elsie. Every day. So she does wear out easily. But we try to make sure she gets good stretches and massages, and good sleep makes a lot of difference as well.



Miggy: What are the biggest worries you face for Elsie?  Conversely, what are your hopes and dreams for Elsie?    
Kim: I worry that she won't be given all the opportunities she deserves. People seem surprised when they find out she can read, do math, etc. Elsie's challenges are physical. But many think, because of the way she speaks, that she is not capable mentally. Oh this girl has dreams! She loves to dance! I would love to put her in a class, but have not been able to figure out what would work. As I said earlier, this girl is stubborn. I think over the years she has figured out that she doesn't have much control over some things, like her body, so what she can have control over...oh you better believe she will. If she doesn't want to do something, she won't. And we have struggled in classrooms settings over the last few years with not wanting to do that hard stuff on her own. I feel like a dance class setting would be that way as well. What I need to do is find her a one-on-one teacher, one that has experience with special needs, because I think she would be amazing. As for her future. I don't doubt one bit she will choose some kind of profession to help other like her. Maybe a PT, or some other kind of therapist...maybe a pediatrician. And she would be amazing! This girl can do anything she puts her mind to!

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?  
Kim: Oh man… potty training comes to mind when I think about humor. We started potty training at about 5. What people don't really think about is how much muscle is involved in the whole potty training thing! So how did we finally teach her to relax and let go??? Oh, we tickled her. Ya. Many a laugh fests in the bathroom :)  I still use that trick on days that she is extra tight and I NEED her to go potty before school, cause then she will hold it ALL DAY, which then causes other problems. BUT… now every time she laughs, and I know it has been a while since she has gone, I make sure anyone who is making her laugh STOPS!  :)

Miggy: I know one of the struggles you and Elsie face is that although she is high functioning but because her walking and talking are affected people also assume she is mentally impaired and treat her differently because of it. Of course, there is nothing wrong with having mental disabilities, but when you don't have impairments and you are routinely treated as such, that can be a problem. How can people best approach or respond to Elsie? Is there something you wish other people knew so as to avoid awkward or hurtful situations? I know you're having struggles with her school right now--what do you wish they would do differently to accommodate Elsie?

Kim: Yes, I feel like over the last few years, she has been treated as not her normal age. I feel like she has become almost accustomed to not having to do the things kids her age can do, things that I know she is able to do. And therefore, she has fallen behind. I know she is loved by all those who have worked with her in the school system. I am grateful for all the help we have had. They all truly love her and want the best for her. Third grade is a rough year. I feel like the kids are noticing more and more the differences between them and Elsie, and it breaks my heart. I also want her to try to catch up as much as possible this year.  I know she can.  It will take baby steps to get her to realize that she doesn't need an aide right by her side to help her with each step. Because we all know she can do it.


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 Elsie?
Kim: My children are all amazing. My oldest, Madi, maybe had to grow up too fast because of all the things we had to do with and for Elsie as she grew, but she is the most reliable girl I know.  She was always there by my side when Elsie was a baby to help with whatever needed done. She is still that way. I know that if I ask Madi to do something, it is gonna get done. Cassi, my second oldest, is the most compassionate. She is always there to help Elsie.  But most of all, she has been a huge help to many other special needs kids at the school. She was requested to be in one of her friends class for 5th grade because he responded so well with her. She is all heart and I know she was meant to be Elsie's sister!


And then there is the boy. After we had Elsie, it was hard to convince my husband to have another baby. I won't lie...Elsie was hard. For the first 4 months she cried. Non stop. It wasn't until then that I realized she wasn't getting enough to eat. She would only suck for 5 minutes at a time. I know now why--it wore her out, but back then I had no idea!  So I finally cut the hole in the bottle nipple so the milk would almost drain down her throat...from that day on she was all smiles :) Anyway, we finally had another baby. Our boy. We call him Porter the protector. And although he is ALL BOY, there is an extra tender spot he has for Elsie Rose.  We know he was born after her for a reason. He will be there to protect her through her school years. He watches over her and stands up for her. I know that it will just get better as he gets older. But it makes my heart so happy to see him with her.



Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?
Kim: I have learned so much from my Elsie bug. She helps me see how blessed we are. How we take things for granted. I am thankful that she was sent to me. I have learned more from her about pure love than I could ever learn in a lifetime by myself...she loves with her whole heart. She makes me want to be better, to be the mom that deserves to be her mom! But the biggest lesson has been that we are all the same. We all struggle in some way or another. Some are just more visible. She has taught me to love no matter what. To give people a chance--everyone deserves that.

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Kim, thank you so much for sharing your sweet Elsie bug with us--she is such a cutie! And a big YES to your last thought, "But the biggest lesson has been that we're all the same. We all struggle in some way or another." Something about being a special needs mom really makes you understand this in a very real way. And I appreciate your honesty about your struggles and worries. I have always hoped to shine a positive light on having a child with special needs, but I never want to gloss over the very real and very difficult realities either. But of course it's clear--as it always is--that you love your daughter so much. Thanks again Kim!

Readers I know Kim was really hoping to connect with other families who are facing similar challenges with a child is who is a similar age range. So please check out Kim's blog or email her directly at bkmcep@gmail.com if you fit the bill.

Thanks to everyone who reached out after my last instagram post asking for more spotlights! If you emailed and haven't heard back, please be patient I'm getting there! Also, I am ALWAYS looking for more spotlights so please if you or someone you know would make a great special needs spotlight please email me! Or have your friend/family member email me directly at thislittlemiggy at gmail dot com.  

Have a great weekend!
XO
Migs


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