I had a meeting with Drake's teacher this morning and something amazing happened during that meeting. It was almost like the heaven's opened up for a moment and everything became crystal clear. I felt this instant relief flood through my entire body. This feeling only lasted for a second, but it was powerful enough that it took me a few minutes to be able to drive when I made it back to the car. I love his school. Every single person...right down to the janitor knows my child by name and they all treat him like he is the most important person there. His teacher and the rest of the staff in his special education class are phenomenal human beings. When I drop him and Koda off in the morning, I don't worry...ever. I could never put into words what a huge relief that is. I never thought public school would work for Drake. I heard too many horror stories and went into my first IEP last year with all my paperwork, my advocates, my therapists, and I was ready for a fight. I never had to fight...
You see, I have been in full-blown mission mode for the past four years. Every single thought, breath, and moment has been in high gear. From the moment Drake was diagnosed at two and half yeas old, I was on a mission to make his life as bearable, happy, and content as possible. I knew he needed good, solid therapy. I knew it would be a battle to get that therapy and get him all the services he needed. I researched, I sent emails, I made phone calls, and I prayed. If the person I needed to talk to could not help me, I called someone above them. This has truly been my life the past four years. Thankfully, and by God's grace, I have been able to get everything Drake needs to help him. There have been so many times when I've wondered if I'm doing too much, or if I'm not doing enough. It has been a constant battle, mostly with myself to do whatever needs to be done to help Drake be the best version of himself. In the process I've become a terrible friend, someone who forgets important events, I've given up hobbies, I am more snappy with my husband, I've become a bit demanding, I need more naps, and I'm physically and emotionally exhausted. But you know what? It was worth it. Every single bit of it. Every sleepless night filled with nail-biting anxiety, every phone call, every email...it was all worth it.
Throughout these four years I have made changes when necessary to make sure Drake is happy, learning, gaining independence, and just being allowed to be a kid. I have pushed him to be the best he can be....but never close enough to the edge that I feared he would fall. This morning when I met with Drake's teacher we talked about many things. Drake has been have some minimal behavior problems the last couple of weeks and I wanted to make sure we are both on the same page. I wanted to make sure he is being challenged enough, or maybe he is being challenged too much. Having a non-verbal child makes it so much more difficult to always know what is going on, but when you have a team of people that understand you and your child...it's a beautiful thing.
Drake's teacher and I discussed several things. We talked about his schedule, we talked about his behaviors, social skills, communication, etc. In the midst of all that she kept saying, "he is so bright." The funny thing is, she wasn't just saying that to make me feel good, she meant it. He IS bright.
Drake is smart, funny, clever, very aware of his surrounding, eager to learn, charming, easily engaged, and so very happy.
Then she said these words: "I have actually changed the way I teach and think about things because of all you've done for Drake."
That was when the heaven's opened. People, seriously, for just that brief moment I knew that it was all paying off. All the therapy, phone calls, long car rides, sacrifices, sleepless nights, research, fights...it has all been worth it. Now, please don't think I am tooting my own horn. Quite the opposite. If anyone deserves a gold medal it's Drake. He has done all the work. This kid works harder than most adults in one day. I admire his strength, perseverance, and willingness to try. However, being a special needs parent is no joke. And when someone looks you in the eye with tears in their eyes and says they admire all you've done for your child and they see it...well, I think that is the goal. Our ultimate goal as parents is to put our children in the right places at the right times so they can shine. Drake is shining bright.
Try as I might, I could never put into words how thankful I am. I'm thankful to be this child's mama. I'm thankful God has given me the tools and the sass to get Drake what he needs. I'm thankful for my supportive husband, family, and friends. I'm thankful for Drake's therapy clinic, his ABA therapists (who have worked actual magic to help Drake), his speech therapist, and this phenomenal school he is attending.
I don't think for one minute that we aren't going to have bumps in this road. However, today I'm sure of one thing, I may not be doing a lot of things right, but I can say with confidence that I'm a good mama. I'm doing the best I can, and Drake is thriving. That's enough for me.
Saturday, December 16, 2017
Sometimes certain conversations stick with you. It's usually not the entire conversation, but rather little snippets. Somewhere in the mix of all the words the person you are speaking with says something that sticks with you. Some words stick a little more than others. Some leave you feeling empowered, some words sting, some hurt, and some just make you think...and think..and think.
Words are powerful. So powerful.
A few months ago I was speaking to someone who I admire greatly. This person was just getting to know Drake and understand him. We were chatting about how amazing he is doing in school and how much he has progressed in a very short amount of time. It was an amazing conversation. There were lots of smiles and I think my eyes even welled with tears. Then she said, "sometimes he seems so normal, like you would never know anything is different."
I distinctly remember pausing for a moment. I imagine I turned my head a little, sort of like a dog does when they are trying to understand something you're saying to them. I think she noticed the change because she then said, "I don't mean that in a bad way." I smiled and said, "I understand."
I do understand. I understood exactly what she was saying. In certain situations and during certain times...Drake doesn't appear to be different than any other child. In other words, he can blend right in.
For some reason, I cannot get those words out of my head. I've thought of them often. I've thought of them so much that it's helped me to recall the times that I have thought those same words.
He looks so normal.
The words make me cringe. Not because she said them, because I've had to admit to myself that I've thought them too. I know for a fact that I've never said them out-loud, because saying them out-loud would make me a horrible person somehow.
This morning while I was drinking my coffee I thought about the conversation again and decided to look up the definition. I read it probably twenty times...
Conforming to a standard; usual, typical, or expected
The first and only thing that jumps out at me when reading the definition is 'conforming to a standard.'
This is the struggle that autistics all over the world face daily. They are expected for conform to a standard. Anything outside of that standard is considered different, strange, unusual, or wrong. No one actually says that, because saying that would be awful. Instead, we say things like, "he looks so normal when he does x,y,z." Perhaps you are like me and you haven't said it....but you've thought it.
You know those times:
He sat in a restaurant quietly and even ate some of his meal.
He played on the playground with some of the other kids.
He said "hello" without needing a prompt.
He sat through a whole movie at the theatre.
He sat with us at the dinner table through the entire meal.
He was completely engaged during our craft time.
We went to a family gathering and he didn't become overwhelmed.
All of those things are things a "normal" kid can pull off most of the time, right? So when our kids are able to do these things...we consider it a huge success. Wow, look at the progress he/she is making. But in our minds, we sometimes think... "wow, he looks so normal."
Even typing those words gives me a small panic attack. Why? Because I don't want Drake to ever hear that his normal isn't okay. All of the things I listed above, Drake has done...like the absolute boss that he is. Therapy has been a huge part of helping him to be able to handle himself in otherwise uncomfortable situations. However, never once have I taken him to a therapy session in hopes that it would make him what society considers normal. I take him to those therapy sessions so that he can understand how to cope with a society that doesn't understand him. And while I have been guilty of letting words like, "that seemed normal," cross my mind. I am sickened by the fact that my brain sometimes thinks things that my heart doesn't agree with. Being autistic is Drake's normal. Because his brain works differently than mine, that doesn't mean I am more normal than he is. I feel like many times autistics are expected to be chameleons. They are expected to act, behave, or handle themselves just like everyone else. It's okay for them to be different, but they need to change to suit the needs of those of us who are more typical.
Thats why there are always harsh looks in Wal-mart when your kid has a massive meltdown because his senses are in overdrive. Those onlookers don't understand autism. They want to see the chameleon version. So what do they do? They assume that your child is unruly and needs discipline.
Somewhere along the way, we as a society have learned to see things a certain way. When we see something that is different, we don't know how to respond to it. When society sees a six year old flapping his hands or squealing with excitement, they see a child who isn't like their child. What they are missing is the joy. When they see a child totally overwhelmed by a situation, they choose to pass judgement on the parent. What they are missing is the flashing lights, the echos in the room, and the strong smells.
While I think therapy has been crucial in helping Drake be more comfortable in a world that doesn't understand him, I never want him to think his normal isn't okay. Normal is just a word in the dictionary. I think it's time we all realize that normal has many different variations and learn to accept those variations instead of always searching for chameleons.
Saturday, November 11, 2017
“More marriages might survive
if the partners realized that sometimes
the better comes after the worse.”
I think many people are a bit in awe of the relationship Allen and I have built. Notice I said, built. There is nothing about marriage, or any relationship for that matter, that sustains without constant reconstruction.
We were high-school sweethearts and I don't think anyone expected us to make it...including us. But we did. We have. We still are...making it.
In fact, I would like to boldly proclaim that today we love one another more than we ever have. Allen and I have been married for almost 20 years. In all, we've known each other and been in some type of relationship for 27+ years. Amazing. Truly, I am amazed. It has taken a lot of work and even more heartache to get us to the place we are today. We've had many struggles and barely made it through the first year of marriage without filing for divorce. We were young. It was hard. It's funny to think back on the things we struggled with then, neither of us knowing what real struggles could be.
It has been said that tragedy can make or break a marriage. For us, thankfully, it made us the people we are today. In 2002 we lost our first child to miscarriage. It was an early miscarriage, I was only around two months pregnant. A few months later I was pregnant again. Lexi Rae was born in April of 2003. We were scared to death and overjoyed at the same time. When Lexi was just over 9 months old, as I held her in my arms...with Allen standing behind me, she left this world and went to heaven. Child loss is indescribable, but the bond Allen and I formed during those months can never be broken. He was my rock then, and he is my rock now. You can read more about that story here, Heaven Has A Teenager.
So much has changed in our life since we lost Lexi in 2004. We are older and I'd like to think much wiser. Plus, we have Drake. I'm sure most people believe our lives are cursed. We've lost two children and now we have an autistic child. Nothing could be further from the truth. I cannot imagine a world without Drake. He has brought so much joy and completion to our lives. He filled a huge void that nothing else would have filled. Has it been hard, yes. Do we worry? Absolutely. We've had many arguments on what is best for Drake. We fuss, we fight, we get angry, we raise our voices, but not once have I worried about that man walking out and leaving us. Not once. Above all else, we are a team. No matter how crazy my idea is, if it will benefit Drake and we are able to do it...we do it. One thing I know for sure is that Allen trusts my motherly instinct. It has proven itself too many times not to trust it.
So, how do we keep our love for one another and our marriage strong? We wing it, mostly. Seriously though, there is no manual for this stuff. However, I do believe it requires two people with the same common goal....making it work, no matter what. For us, it also requires these three things:
1. Jesus. I can honestly say that we would not be married today without our faith. The relationship Allen and I have built with one another would not have been possible without trusting the Lord to see us through many, many trials. It would take me days and days of writing to list all the blessings we have received. Many of them you would not believe. There have been so many, "that was God," moments. The tragedies we have faced are nothing compared to the hope we have been promised. I am so thankful every single day for the grace, mercy, forgiveness, and love we have been shown time and time again.
2. Making time for us. When Drake was diagnosed with autism over three years ago our lives changed dramatically. I quit my job and spent the majority of my time on the road getting Drake to and from therapy. It was so different for us, but necessary. That very summer we started a new nighttime tradition. At night, after Drake was asleep, we made time for us. Was I exhausted? More than you can imagine. However, that 'us' time was more important than sleep. We watched TV, sat on our porch, or played a card game/board game. Three years later, we still do this 3-4 nights a week. Of course now we are lazy and generally just watch TV, but it's still OUR time. We laugh, we talk, and we just enjoy one another. I would also like to add the importance of intimacy. We make time for it. It's a must in our marriage and important to keep those fires burning. Allen flirts with me now more than he did in high school and it makes me feel like the most beautiful woman in the world. He spoils me rotten and honestly treats me like a queen. This man cooks, cleans, washes dishes, vacuums floors, and co-parents like a boss. When he has Drake, he isn't a babysitter...he is a parent. Sexy, right? I'm one blessed lady. Sometimes I feel so unworthy of such a man. I can be hard to love. I'm ill-tempered and on edge many days, but he knows how to make me laugh. He knows that my stress level is high, that I'm exhausted and somehow he has learned how to love me in spite of my bad attitude. He gets me and loves me anyway.
3. Find a babysitter. I know, I know...easier said than done. Listen, it took us over two years to find someone. About once a month we get away for just one night. By the way babe, if you're reading this..we are past due. That may not seem like much, but it is the world to us. An old college friend of mine is our babysitter (another one of those "that was God" moments). Don't get me wrong, I was absolutely terrified the first night we left Drake. It took lots of preparation and 52 pages of notes, but we did it. Drake absolutely loves it, but it's not possible that he loves it more than we do. It's our one night to eat a nice dinner and just relax. Sometimes we watch a movie, but mostly we find a place with a balcony..we sit on it, listen to music, and relax. It's the most amazing thing in the world. We still are not ready to venture out and get away more than one night, but I think that is definitly something that is in our future plans.
Our love has never been easy, but it's ours. Long ago, because of tragedy, Jesus, and just good ole love...we became an amazing team. I can't imagine doing life with anyone else. Marriage takes commitment. You must be committed to doing whatever it takes to make it work....and it takes both people working toward that common goal. It's more than words, it's many, many actions over and over that shows the other person that you're in this for the long haul. Nothing about life is easy, and having children with special needs puts so much pressure on an already strained and busy life. However, it's doable. We are doing it each and every day. If I could offer advice it would be to make love fun again. Flirt with your spouse, have romantic dinners (even if it's just at home), make your spouse feel important, encourage them, champion them, support them, and be present(perhaps the most important).
Wednesday, July 26, 2017
A Social Story About Drake
GETTING TO KNOW ME
How Autism Affects Me:
- I am non-verbal. This simply means I have not found my voice. I understand most of what is said to me, as long as you don’t use too many words. I communicate quite well by other means. Hand leading, sign language, persistence, and my AAC communication device (it’s like my thoughts in an iPad. How cool is that?) I have something called, Apraxia of speech. This means that my brain and mouth have not made the connection needed for spoken language.
- I am a visual learner. I will be less frustrated with visual schedules and reminders. I’m very observant and curious of what is going on around me…even if I don’t appear to be.
- I can be very manipulative and will try reverse psychology to get what I want. (I can’t believe my mother told my secret)
- I sometimes struggle with making eye contact. This in no way means that I am not listening…quite the opposite in fact. I listen better when I can process without having to stare at someone’s eyeballs.
- I may have trouble processing language. This is particularly difficult for me if I am being asked to do something I am unfamiliar with. Please don’t use too many words. It is better to show me, rather than tell me.
- I get frustrated easily if I cannot do something. I learn best by repetition. Don’t give up on me, if you continue to show me and encourage me, I will get it.
- Sometimes I have high levels of anxiety. My breathing gets heavier, my palms are sweaty, my complexion is pale, and if things get really bad I may throw up (although I haven’t done that in a long time). If I am anxious, please try to show me that everything is okay. Keep reassuring me and keep Koda nearby to help me feel safe.
- Transitions can be difficult for me because I do not love changes in routines. I’m learning to cope with this. Visual schedules and steady routines help. I also have my dog, Koda, who has helped ease my anxieties.
- I stim when I get excited or I’m really happy (which is most of the time). Stimming can look strange to others, but it is something I need to do in order to regulate my senses. As I get older I will realize that some types of stims are best to do at home. I also tend to be more comfortable if I can have something in my hand like a sensory toy. My stims include, squealing and sometimes screaming (we are working on this in ABA), clapping my hands, or putting my fingers together and tapping something. Most of my stims are vocal or auditory.
- I am not aggressive at all. I’m very affectionate and quite the ladies’ man.
- I am not a runner. I like to be with others and seldom want to do anything on my own.
- Being non-verbal causes me to have high levels of frustration when I cannot effectively communicate what I want, or if I don’t understand what is being asked of me. I scream, rather loudly, when I am at the end of my rope. Frequent sensory breaks will help me to feel more at ease.
- I’m what is known as a sensory “seeker.” I love movement, jumping, touch, affection, tickles, hugs, squeezes, water play, climbing, and rough play.
- I have a couple of co-morbid conditions that often go along with autism. Apraxia of Speech, Anxiety, and I am currently being evaluated for Dyspraxia ( which could explain some of my frustrations in motor planning).
What I love:
· I love my service dog Koda.
· I love swimming and water. In fact, I taught myself how to swim, hold my breath underwater, and I can swim the length of my pool this way.
· I love to jump on a trampoline.
· I love to swing.
· I love animals, particularly farm animals.
· Books, books, and more books. Picture books are my favorite. I love books with animals, Pete The Cat, and Dr. Suess.
· I do not like a wide variety of foods..but I can eat a truck load of what I do like. Pizza is my favorite.
· I love chips
· I love my Ipad.
· I love Curious George.
· I love games like Break The Ice.
· I love to match and sort anything.
· I love music and nusery rhymes. Music makes me happy.
· I love my therapists.
· I love Tumbling and my coach, Brodie.
· I love other children, although I’m not always sure how to interact.
· Sensory toys that are squishy, slinkies, fidgit cubes, etc.
Things I do not love:
· Too many directions at once.
· Change in routine.
· People not understanding what I want.
· Loud or unfamiliar noises
· Cleaning people (Please be patient with me, this is a phobia of mine)
· Being told to do something. I sometimes get frustrated with demands.
· Trying new foods.
· Trying something and failing.
· Being asked to participate when I don’t know what is expected of me.
· Being told “no” when I don’t understand how I am wrong.
These are a few things about me. I hope you know that I want to do well in your class. I want to make friends with other kids but I will need help and patience. Please help me as I adjust to your style of teaching and realize that I learn differently and can get easily frustrated. More than anything in the world, I want to feel accepted and I prefer to be treated like everyone else. I also need you to help my friends understand what autism means and how it affects me. It is simply a different way of learning, but learn I will.
Koda is my service dog. My parents worked really hard and raised lots of money to get her for me. She is my best friend. I’ve had her with me for over a year now. She has taught me how to play, how to use my imagination, and how to interact better. Having a service dog is still new to me and I am always learning how to use Koda to help me feel calm and safe. When it’s possible, I would like for Koda to be near me, but she doesn’t always have to be right under my feet. Once Koda gets adjusted to being in the classroom with me please feel free to pet her and give her love on occasion. She loves attention even more than I do! It must have something to do with her being a girl….
My mom is going to attach her list of commands so you will know how to talk to her. She is like me in many ways, mostly because she doesn’t talk. But, like me…she listens very well. Thank you so much for allowing her to be part your classroom this year. I know you will love her just as much as I do before long.
If you ever have any questions about Koda please feel free to contact my mom. She will be glad to help in any way she can.
I’m so excited about being in your class this year. I hope you are excited to help me grow!
I'm sure everyone has read Welcome To Holland . This short but powerful piece has been useful to me several times on our journey. I ...
A Social Story About Drake GETTING TO KNOW ME How Autism Affects Me: I am non-verbal. This simpl...
“More marriages might survive if the partners realized that sometimes the better comes after the worse.” -Doug Larson I thin...