Saturday, December 20, 2014

Thank You

I'm in an elated mood. It is surreal. I'm DONE!!!! I have the new recipient of a Bachelor's degree. I pulled a weekly all-nighter to make sure that my work got done for 4 years, I balanced my school and being a full time mom. I did it. I can enter into the workforce and follow my dreams. I am so fortunate because I have always known what I wanted to do and I get to do it! My heart didn't want to be an astronaut or something unattainable (although for the first 5 years I was pretty set on being Dolly Parton). I simply want to serve kids with disabilities for the next 30 years; it's doable and I am free to do it!

I didn't do this on my own though, in fact without the support of others I couldn't have made this happen. I want to take a minute to thank those people.
My husband - First and foremost, my husband deserves the most credit. He made it! He has survived many many outbursts and breakdowns and a lot of drama in the last few years. Every time I was discouraged or overwhelmed, he was there. He knows when to motive and encourage me and when to motivate me and say "fine, then quit" (knowing full well I won't quit), He gets up early but still says goodnight when I roll into bed at 3 or 4 every Sunday night. He is by default the responsible parent on his days off every Tuesday when I need to get hours in the classroom for school. And last but not least he was supportive and being a community property state, he shares my student loans. Thank You.
My Father In Law- He isn't here for me to thank, he was amazing. He was always there on short notice to take the kids while I went to class or did my practicum hours. He supported me and he took good care of the kids. Thank You.
My  mom - Terry-Ann is the one who gives me advice. She is a sounding board when I need an older wiser academic opinion or if I really just need to emotionally purge. She listens patiently and tells me the truth. Thank You.
My Sisters - They motivate me and always stay positive. They're honest and truthful but always push me forward and keep me positive. Thank You.
My Aunt Terri - She prays me through it. Thank You.
My Nana - She always believed in me and was always on my side. She was my biggest fan. Thank You.
My whole family, best friends, and core group- You have been there for me each taking a turn with the kids, giving me words of encouragement, listening patiently when I need to vent, or proving some solace and friendship and filling me up so I could get back on task. Thank You.
My Family in Twin Falls - They opened their homes to me and 2 kids when I had to do my summer internship. It was the hardest emotional 8 weeks. Thank You.
My Mentor Teacher - One of the most patient kind people I know. Oh man, student teaching taught me so much and stretched my brain in crazy ways. I learned so much more than how to teach a class. I am not an organized or always on task, but I'm getting better. I have never managed staff or considered all the layers of the jobs, but she taught me and let me feel the weight of it in a safe place. The paraprofessionals in my room all gave me grace and kept a sense of humor while I learned how to orchestrate an entire special ed room.  Thank you.
My Advisor and many nice professors- My advisor blessed my life. He answers emails at all hours of the day and night, he can't be phased by crisis, he's always constructive even when I'm ridiculous. My professors gave me grace. I had a hardship (not small hardships) almost every single semester I was in college, I lost track of everything that happened. I had an auto immune disease, had a baby, my baby had special needs, I lost 3 people over 3 semesters, and so much more. They gave me extra time, they gave me their time, they answered questions and talked me through various things. Those people all had a hand in my success. They all pushed me to keep being better. Thank You.
The teacher who really got me started - there was particular teacher who is so gifted in her craft. She took me under her wing 15 years ago, mentored me, and has always been supportive. Thank You.

Thank You all for this journey, thank you for helping me and being my village.

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! 

Monday, March 24, 2014

Looks like we're staying in "Holland"

It's funny, it's been almost a year since I wrote my last blog and in that year we have come so far!!! ...but the subject matter is going to be the same. I feel like every family I have ever known who was affected by a disability only gave me a glimpse of this life no matter how well I thought I knew them. I have even lived with and taken care of children and it STILL didn't prepare me for this parenthood experience. I always thought "if I happen to have a child with special needs I will be just as thrilled and maybe even excited for the privilege and unique experience". Well, here I am and I feel like a big fat hypocrite. My mind tells me everything I have always believed and have been convicted of as true; it doesn't need to be "fixed", it should be embraced; it is a privilege; the only disability in life is ignorance. Every single belief I have ever held has been tested and continues to be stretched in new directions and my emotions and instinct completely contradict what I know to be true. No one tells you or could ever prepare you for the contradictory feelings that a mother experiences every time their child misses a milestone or tanks an assessment or sees progress but is then met with the progress of a same-age peer. I have heard all of the reassurances, we have wonderful support and very well meaning friends and family. Sometimes they help and sometimes you just have to appreciate their intent and love behind what they say.
        So what's different now? Nothing is different just more knowledge and more to adjust to. Why do I choose to share this? It helps to write it out and if it helps one other mom who is scouring the internet looking for answers or comfort then it will have been worth it. There is power in connecting with another mom who "gets it". the people in your life who "get it" are treasures, they are precious and there is no amount of love or words that can be expressed in return to measure how it feels to be understood.
         When I last wrote I shared a piece about a metaphor about traveling and being surprised by the destination. it just isn't what you were prepared for and even if you're willing to go to Holland, if you were planning on Italy then you will be surprised and you will need to time adjust. I have news, the adjustment is ongoing and there are continuous surprises. I think that Holland (at least for our purposes) must be a very unexpected place with new things around every corner. In the spring of 2013 we won the hard fought battle to get some sort of diagnosis which helped us in many way, the best is that our insurance actually started to help out with her costs because they didn't cover developmental delays. This spring (2014), Faith went through transition testing. This is the first round of testing that might be the first of a long line of assessments that you will have to take in stride and keep in context. These assessments are the first to say "after all of your early intervention and hard work you still need more tools" or "well done, you did it you learned the tools you will need to make it on your own for now". These tests are the first that will determine if your child qualifies for their first experience with special education, in our state we only offer preschool if the child qualifies for special education, those kids get to go to public preschool.
         Here's a crash course in special ed qualification (I'm pretty qualified to tell you this because I'm getting ready to graduate with this exact degree!) Every child develops at their own rate but most form a pretty consistent chunk that we call "normal". To qualify for special education you get testing in all sorts of areas; cognitive, speech, motor, behavior, etc. For a child to need special education they must demonstrate enough of a variation to affect their ability to learn and benefit from a classroom setting, we call these variations deviations. Children in special education have (at minimum) 1.5 deviations in two areas or 2.0 standard deviations in 1 area. There are some nuts and bolts that complicate things but this is the basic formula for your purposes. Now, a deviation is a BIG gap, there is a whole lot of variation within the "normal" range. Kids who are 1.5-2 deviations from the norm are in the 2-6% for development in the area that has been tested compared to their peers. So if you took 100 kids and gave them all the same test which at this age consists of a play date with some block stacking and shape sorting and colors and some ability to demonstrate understanding to what is being asked, if you took all those kids, the last 6 ones MIGHT need extra tools and definitely will receive more follow up and the last 2 definitely get more tools (special education).
      We just went through 3 different assessments, speech which measures expressive and receptive language skills, cognitive, and motor skills. Faith has 1.5 standard deviations in motor skills, 1.5 - 2 standard deviations in speech, and 2.4 standard deviations in the cognitive assessment. So, the good news is that she definitely qualifies for preschool. She would have qualified on speech or cognitive alone.... So where does that leave us? It means we're still in Holland and I'm not sure we get to leave. I actually was surprised by one of these test results and we are still adjusting to the idea of it. Honestly it seems like as a parent of any child and especially as a parent if an interesting child you never stop being surprised. I have a couple of ladies who have been fantastic sources of support and they tell me that the unknowns don't really stop but you get used to having the unknowns and you can kind of adjust better to it all over time. You get better at being surprised and a sense of humor helps :-) Sometimes when I just say the facts out loud it feels like I'm speaking a foreign language, it feels like it doesn't fit and it feels like it doesn't make sense. But most days we have our own "normal" and we just take one day at a time, we just keep our eyes on the Lord and let him him drive this crazy bus since he knows where we're headed. We celebrate our victories just like any family and we try to keep things balanced, we do have 2 other children who are also wonderful and they deserve as much attention as their sister.
       Life sure is funny sometimes and sometimes it seems like a really crazy ride but overall I wouldn't choose anything else. God doesn't give me anything I can't handle WITH HIM and in a lot of ways I feel like our interesting bits are an opportunity to reach out and connect with others.