Tuesday, June 17, 2014

CNN put out a call to parents of children affected by special needs... I responded

CNN asked parents of kids with special needs to share what it was like to be a parent of a child with special needs. Here is what I submitted to them-

     I am the mother of 3 children; ages 7, 5, and 3. My youngest is a product of a failed vasectomy after 2 years! She’s our only girl, she is so full of joy and love; and at first glance you might not guess that she has worked very very hard for everything she is able to do. You may not see at first, the braces on her legs or the supportive garments she wears under her clothes (I call those her exoskeleton). My daughter’s name is Faith because of her miracle conception; her middle name is Isabella which means God is a promise. We didn’t know when we picked out her name that she would be born with very low muscle tone that would later be diagnosed as hypotonic cerebral palsy. I didn’t realize how much I would cling to her name and the meaning (Faith in God’s promises) as a beacon that would help me through some really hard days.
   Being a parent to a child affected by special needs is wonderful and beautiful and special; it is also at times heart breaking, tiring, and maddening. Is it worth it? YES. Did I know what I was getting into? Nope. I thought I knew what I was in for; I had 14years of experience serving individuals affected by profound special needs before God saw fit to give us Faith. I knew from my life experience that my daughter was different, I knew I had to fight for her, and I knew that every intervention she could access would be key to her development and long-term quality of life. I did not know about or anticipate those early days when I could keep it all together in public but I was so worried and my heart would break every time I saw another baby who was Faith’s age and every month they did things she couldn’t do. I did not know about the unknowns that seem to grow with her; the more answers you get, the more questions that pop up. I didn't know about how no matter how many times we go through assessments, my heart cries when we get low scores. I did not know that parenting a child with special needs is like a world famous triathlon compared to parenting in general which I would compare to a marathon.
   There are days when I’m tired and sometimes I get mad at the system (all the hoops we have to jump through) or the world in general for the lack of understanding. I don’t blame anyone for Faith’s disability; she had a stroke in utero; that is what cerebral palsy is. Some people know what caused their child’s disability, sometimes trauma, sometimes its genetics, sometimes it is an outside factor. Many of us don’t know what caused this and in Faith’s case, it appears that it was totally random and I would guess that it was around my 8th month of pregnancy because she used to run like a hamster at 1 in the morning. Then one day she stopped running, and I went in and got checked and everything looked ok but she didn’t run again until she was almost 3 years old. So I don’t blame anyone, I consider it a privilege but I also like to make a connection about a story I once read about having a child with a disability is like ending up in Holland instead of your dream vacation in France (look it up, it’s worth it). Anyway, just because you’re willing to go to Holland doesn’t mean that you don’t need to adjust and it isn’t sometimes hard when you end up in Holland and you were all set for France. "Holland" sure is beautiful though! There just aren't words for how I feel about my daughter. My heart soars when she meets a milestone, her smile lights my universe, and I would not change her for anything in the world. Her challenges give her a unique perspective.
       I don’t really have any right to get med at the system, we happen to qualify for Medicaid and I can’t get mad at it because we are lucky to have it, it is a privilege that allows us to provide for Faith’s needs while I’m a full time student and working to make a better life for us. I don’t get mad at people who ask questions, I welcome questions and will MAKE time for you and make sure that you get all your questions answered. I believe in educating and empowering which doesn’t come from getting irritated with questions. I love questions, please ask and let your children ask me why my daughter wears funny shoes on her legs! I want to tell you! What hurts are comments like “she’s looks fine to me” and “are you sure?” SERIOUSLY?!?! Yes, I have a thick skin and yes, I had an adjustment period for that too and I learned through some of my mentors to look at what people intend, rather than what they say. Many times, people don’t know what to say but they feel like they have to say something and crazy stuff pops out and they don’t know how it makes my heart feel. I have learned to graciously say thank you and something like “yes, thank you, Faith has worked so hard and come so far, we can’t wait to see what her future holds”. I try to be honest with people, if something is too hurtful or just plain politically incorrect, I will gently but firmly speak up and provide an alternative word, phrase, whole education on the disabled population…. :-)
       I want the same thing for my daughter that every parent of any child wants; I want to give her the tools to be the best she can be and I want her to grow up in a world that embraces her unique abilities, educates the ignorant, and empowers my daughter to be her own advocate. I don’t’ expect everyone to do this for me; after all education begins at home and rest assured, we do our share and will always provide for our daughter and stand behind her. I do expect people to be good, compassionate, and try to look beyond themselves and see that even though everyone is different and some appear to be able to do less; everyone has SOMEthing to contribute and everyone deserves the chance to contribute to our world in their own way.
         My everyday life looks a lot like everyone else’s. We just happen to have therapy 3 times a week and a couple of supplemental unofficial therapies (gymnastics and horse therapy). We are mindful to give our boys things that are their own, they play baseball and one plays basketball and the other also plays hockey. People ask me how we do it all, here's the game plan: every morning I pray and I committ my day to the Lord, I say "God whatever you want me to get done today, I know I can do it with you." ...Somehow it all gets done :-) We tell the boys we are a team and we have to work together, their sister cheers for them no matter what they do and they are expected to do the same for her. She gets a lot of things that are a luxury for for most people but are essential to her (like a swimming pool, a swing, a pass to the aquarium) and we realize that our boys are just kids and they might not see the need. We make sure they are included; we spend one on one time with them and make sure they know that they are loved and valued. We just try to keep that attitude all around our family, everyone is loved, everyone is valued, and everyone has a hitch in their giddy-up somehow. We work together, we are patient, and it’s ok to sometimes feel mad, sad, jealous, and overjoyed- it’s all about what you do with it. We have made accommodations for the boys, no one should have to go to that much therapy for someone else or that many specialists and be expected to just sit there, the boys have kindles and it’s sort of a mutiny merit badge for them and all they do and tolerate. They love their sister and have learned how to answer their friends’ questions. They are a huge part of our hope for the future and Faith’s quality of life; our family knows a lot of people and in our actions and our words and our attitudes, we can live a life that shows that it is possible to love and appreciate different abilities.
      I don’t know what my daughter’s future holds. I don’t know how much she will grow and develop before she hits that plateau and stays put, I don’t know if she will ever hit that plateau or if she will grow into a very typical adult who just happens to have memories of a lot of therapy and some orthotic devices along the way. I don’t always know what the best thing is for her and I’m thankful for the people who we have who are there for us along the way, no family affected by special needs makes it work all by themselves. We have a team of amazing therapists around us, specialists, friends, our family, our church, and God… remember, we have Faith in God’s promises. He never promised he would “fix it” or keep hardships away, but he does promise that we won’t walk alone and we can do all things through Christ who gives us strength. God did not allow us to conceive a child two years after a vasectomy for no reason; we have faith in Faith! 

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