we're continuing our series on interviews with special needs mamas. please meet my new friend sara, mother of 3, from lifeisbeautyfull talking about her sweet little girl.
1) give a brief explanation of your child's age and special needs:
first, willa is very tiny for her age~ this all started in utero. shortly after she was born they discovered she had different size legs. this sent off a whole list of specialist she was sent to... a geneticists, a neurologist, a orthopedic surgeon, she was seeing a cardiologist because of her enlarged heart and excess fluid around it in utero (which eventually resolved itself...a pure miracle), and a physical therapist. as the years went on her developmental delays seemed to get well, more and more delayed. she has low muscle tone. she has a hard time sitting still, paying attention and keeping focus. she is impulsive. because of her severe developmental delays she is in the basic plus program at school where she receives one-on-one para educational support, pt, ot, speech, and special education resources and para support. developmentally she is 3 1/2-4 years old. a couple years ago we did a micro-analaysis genetic test~ fully expecting to find the answer and put this puzzle together. we did not. because of her leg length discrepancy (hemihypertrophy) she gets ultrasounds of her abdomen and blood work because she is at a higher risk of developing a fast growing tumor in her kidneys/abdomen. her cardiologist told us that something happened in utero for all of these things to happen to her... we may never know what....
2) what is important for me to know about your child?
willa is sweet and sensitive. she is such a happy child. she's a people pleaser. she is so loving and lovable! everyday she surprises us in someway. she is pure joy. and she's all over the place and into everything. most the time pretty much acting like a toddler. she will play with other kids... but pretty much just parallel play... interacting on her peers level doesn't comprehend for her.
3) what is something that is deeply hurtful about interactions with others, pertaining to your child?
dirty looks. assumptions. one time in an airport...a mom with her same age daughter called her crazy. where both willa and I heard her. aweful. i've gotten "looks" and remarks at dance class (willa's) all when
they really just have no idea.
3 and 1/2) can you think of a super positive interaction with other people, in dealing with your child, that left you smiling?
willa's new friend at school asked if she could eat lunch with her... at lunch bunch where willa goes with a smaller group of kids. another little friend said that willa's shoe lift is the coolest high heal she's ever seen.
i walked into the school variety (talent) show a few months ago and the whole school seemed to know and love her. i had tears the whole time. i kept hearing kids call her name. numerous parents came up to me and told me how much their child enjoys willa and talks about her at home (mostly older girls)
4) what is helpful from me when i interact with your child?
she asks A LOT of questions... over and over again. sometimes the same ones. sometimes they make sense and sometimes they don't. sometimes she can focus on what you're saying and sometimes she can't.
she can do and say some whacky things... or possibly something inappropriate...but she doesn't know or understand.
5) sometimes i don't know what to say. what are good questions to ask about your child?
i guess it's just good to keep in mind her developmental age when talking to her. to keep in simple and not complicated. be patient. repeat yourself if you have to. explain if you have to.
6) what do i do when your child is acting out and i'm standing right there?
sit back quietly and wait for it to pass. then just pick up where you left off... just like i do with my kids~ i pretty much ignore the behavior until it's over.
7) how has the gospel intersected your experience with your special needs child?
without the gospel having a child with special needs would be a whole different ball game... one very clear example i have where Jesus showed me He is in control is: at her dance recital last year. i knew that her actually getting on stage and doing the dance was a toss-up. she never had gotten through the whole thing at once with out loosing focus and looking off or just standing there. right before she went on I prayed that He would be with her. that He would take care of her and help her to show what she knew. well.... she got on that stage and not only did every.single.step... but she shined like i've never seen before. she even added in her own extra flair. at one point she dropped her wand and i thought surely she would never recover from there and she did~ with flying colors! and went on to do the same thing in her next dance. i literally saw the Lord pick her up in front of my eyes and show me that He is in control, that He has her in His hand... and that it won't be an easy road~ but He's got it.
8) what are some ways i can help you?
just being understanding. and a good listener. usually there are no resolutions that are going to come of talking about it... but just to be heard and understood. having a person to listen and be compassionate.
i've heard so many times "oh, she'll be fine"... that doesn't exactly help. these problems are real. and are not going to just go away. and most the time I justneed to talk and maybe cry and get it out.
i love that i was chosen to be willa's mama... i am so proud to be. i love having her in my life. is it hard?, yes. is it a struggle?, yes. but i wouldn't have it any other way. He made her perfect. and just the way He wanted her. and with all that... he thought of me (us) for her?! wow. what an honor to be picked to raise this special beauty. she is the heart of our family. i see her making impacts on people all the time. she's gonna do something big. and what a absolute joy to be a part of it.