Tuesday, November 3, 2015
I Can Breathe.
When we have meetings with Tayler's teachers like the one we had today, it reaffirms every decision we have ever made for her. I'll admit, I was a nervous wreck walking in to the classroom. Unfortunately, when your child is special needs, most of the time you hear what he/she cannot do. It weighs heavy on a parent when you're bombarded consistently with the fact that your child cannot communicate verbally, has low comprehension skills, does not like spending time with others, etc.
BUT it was a breath of fresh air in our parent-teacher conference today. The first thing we heard was: We love Tayler so much. *ding, ding* Loving our daughter is the key thing. Loving her ensures that patience will come a little easier. This is why I think there's a special kind of people that become teachers. You have to be packed full of love for kids that are not your own. Kids that will test you every day. Kids that aren't always 'easy' to love. We hit the jackpot with the group of teachers/techs, etc. that work with Tayler every day.
Next, we heard about how she is developing in her listening skills; how she sits still on the carpet during rest time and plays with toys quietly; how she is making friends; how she knows her alphabet; how she is learning patience.
We heard what she CAN DO. CAN. Not can't.
My heart was so full.
But what happened next reassured me that these women are treasures in our life.
One teacher began crying and said, 'God gave us this little girl for a reason and we are grateful for it every day.'
When we were looking at preschool programs for our daughter 6 months ago, this is what we desired and I am so thankful that we found it. It was a long search with some tears, but today made us realize that Tayler is exactly where she's supposed to be. We are exactly where we are supposed to be.
Not only are we in love with the school and staff, but we are also grateful for the tech that has been assigned to her. She goes everywhere with Tayler to ensure that she is safe, following directions, clean, etc. She is one of the most patience, passive people I have met and we are truly blessed to have her caring for our daughter. She is watching videos and learning everything she can about Autism, how to handle it, etc. She is going above and beyond... not because she's paid to... because she loves our daughter. What more could two parents ask for?
Now, I know at the end of the day that we have a ton of progress to make, but to hear that we are making progress when we were told a year ago that Tayler wouldn't retain anymore knowledge means more to us than you'll probably ever know. She won't retain any new knowledge, but she can spell her name, say the alphabet, sing about 25 new songs, open and unlock doors, count to 20. (Hint of sarcasm there, LOL)
I needed today.
So many times I feel so burdened. Tayler is not a burden. But the daily dealings of Autism weigh me down. I just want the best for her. I want her to have the best life she can have with all of the resources possible. I want everyone surrounding her to be believing in her and pushing her. And I feel like we are there.
Today.. I can breathe.
Wednesday, August 26, 2015
Abandoned.
I recently applied to go back to school for my ABA Certification and I was accepted, so I have slooooowly been working through my first class. It is so much information to take in. Some nights I feel like my head is spinning. Especially with the discussion of positive reinforcement, negative reinforcement, positive punishment, and negative punishment, but I am getting there.. little by little. I just keep telling myself it will be worth it-- especially when I'm able to finally stop doing photography (even though it's my passion) and focus on helping her! I really want to start working with her and applying these new skills, but I feel so burdened down with other things right now. I am ready to have more free time to focus on her...
And in other big news..
We enrolled Tayler in preschool.
And I am a bundle of emotions because of it.
Do you know what it feels like to have your heart walking around outside of your chest?? My kids are each individual heart beats... and do you know how it feels to walk your heart beat to the door and just leave it?
Now, let me be honest, we have an amazing support system. Her teachers, behavior itinerants, etc. are wonderful. They have had nothing but good things to say about the classroom and their routine. They seem positive and upbeat knowing that Tayler is entering their classroom. That isn't the problem. I'm not worried about trust or worried about Tayler's well-being whatsoever.
What I am worried about is how she will do-- plain and simple. Tayler struggles with simple things-- talking, sitting still, following commands, making friends. What happens when she doesn't follow an order? What happens when she has a meltdown? What happens if she refuses to listen? What happens if she doesn't sit still during their class time? What happens when people begin getting frustrated with her? She requires so much patience.
We had a meeting tonight and I just feel a mess after. Everyone is wonderful from the school-- it's my own worries and burdens I can't shake.
I get so angry in these situations.
Not with Tayler.
I get angry with God. And please know that I'm speaking with an open heart here. If you haven't ever been angry with God, I commend you. I'm just raw and honest when it comes with this stuff. I hear my daughter scream through a screening. I watch her struggle to sit still. I watch her get nervous. I watch her obsess over colors. (And note, I'm not saying she's stuck in this 'world' she's in. I'm just saying I am currently observing her actions.) And I get so mad at God. I found myself sitting in the van on the ride home tonight thinking, 'Why? Why on earth would you want a 4-year to struggle? Why would you want to make it hard on her to make friends? Why would you want to make my heart shatter in to a million pieces over and over again? Why would you want to see me cry myself to sleep some nights when I think about the future?"
And I know that there's a reason for everything, but sometimes a mom of a special needs child doesn't need to hear that because quite frankly, it just makes things worse sometimes.
Sometimes I just need to be mad.
It doesn't mean I don't love God. It doesn't mean I don't trust Him.
It just means I'm angry.. frustrated.. and upset with Him.
I'm not a doom-and-gloom person. I hope for the best for Tayler. I pray for it every single day. Every time I look at her. I find myself praying before bed some nights-- 'God, I know I can wake up tomorrow and she's healed...' I know I can. I have that faith. I know He is a miracle worker...
but there's those days I get angry because I think 'why won't He does a miracle for her?'
He knows my heart, so that's why I'm open about this stuff. There's no use hiding my pain.. my sadness.. my frustration. Some days, He knows, I feel abandoned.
Do you know how bad I long to hear 'I love you' from my daughter? Do you know how bad I long to have a conversation with her?
Do you know how much I know He can do it... and it kills me inside that He doesn't?
Everything happens for a reason... all in due time...
but sometimes that doesn't heal this kind of pain.. this kind of hurt.
I love that little girl more than anyone will ever be able to fathom and I will fight until the day I die for her to have a fulfulling life. I will fight through my anger. I will fight with hope. I will fight with faith. I will work my butt off to make sure she knows how much she is loved... how treasured she is.. and I will fight that she always sees her potential.
I love you, sweetheart. I will use every bit of strength I have to fight for you.
And I will keep praying.
And hoping.
And working.
Til He hears.
Friday, May 29, 2015
You Don't Prepare Yourself for That
Wednesday, April 22, 2015
I Don't Have Time
During this evaluation, a psychologist asked me a question. He said, "What are your concerns for your daughter?" Now, this is a typical question for us during meetings, doctor's appointments, evaluations, and more. But it still stings every single time I answer it.
"What are my concerns? We have little communication with her and little comprehension as well. No matter how many times I see this in her, I ask myself the same questions-- Will she be alright? Will she have friends? Will she go to mainstream school? Will she fall in love? Will she have sleepovers? Will she move out on her own? Will she be happy?"
These thoughts are constant. I think about this every single night. Every single time I watch her sleep. Every single time I look back at her while sitting at a stop light. Every single time she's giggling. Every single time she's throwing a tantrum.
Finishing up my thoughts concerning my concerns for our four-year old, I said, "And last, will we be her caretakers for the rest of her life?"
That one can keep me up all night if I think about it too long.
I'm used to these discussions. I'm used to the doctor, psychologist, pediatrician, geneticist, etc. nodding their head, signaling that they understand my worries. Not this time though. It was different.
The psychologist looked at me straight in the eyes and said, "That's a huge possibility, Mom."
I just sat there, staring. Did he just say what I think he said?
Now please, don't get me wrong. I don't expect doctors to tickle my ears. When they try to beat around the bush about things, I'm usually the one saying, 'Be straight up honest. I can take it." I don't need someone to care about my feelings. I want the truth. I don't expect doctors to speak with an all-knowing voice that 'Yes, your daughter will be in main stream school. Yes, your daughter will have friends." I don't expect someone to be fake...
BUT.
I do expect HOPE.
If you look at my child and you don't see her full potential.... you don't see with hope... you don't see with faith.. I don't want you actively involved in our lives because none of us need that kind of negativity.
Staring at the psychologist, all I could think was--- she's 4. Her life is just beginning. How can you spend 15 minutes with her and judge her immediately? How can the only knowledge you have of her condition be what we have told you in an hour... And you feel confident enough to say 'That's a huge possibility, Mom?' She's 4.
Saturday, April 11, 2015
I Live in Two Lands
Monday, March 23, 2015
Together.
Friday, March 20, 2015
Grieving
Thursday, March 12, 2015
FIGHT.
GAD (General Anxiety Disorder) affects 6.8 million adults, or 3.1% of the U.S. population. Women are twice as likely to be affected as men.
Panic Disorder affects 6 million people. Or 2.7% of the U.S population. Women are twice as likely to be affected as men.
I am one of the 6.8 million adults affected by anxiety.. I am one of the 6 million people affected by panic disorder.
It all started when I was 13, although it wasn't anything too overwhelming. Just a lot of deep breathing if I had too much idle time on my hands.
I was actually doing alright coping with the mild anxiety I had all through school.
Then college hit. They say anxiety can happen due to genetics.. Or traumatic experiences. I am not sure what the root of my struggle was... All I knew is it was real.
It didn't control my life at first.. Only hindered me from doing a few minute things. Then, for some reason, it became life changing. I kept getting worse. Sitting through a college class, I became obsessed with worrying.. 'What happens if I pass out and I'm 20 miles from home? Will they take me to the hospital? How will I get home if I have a panic attack? What if I pass out while I'm driving? What if no one finds me?'
These may seem like weird thoughts to others.. Almost ridiculous, but they consumed me. Fear started ruling my life.
December 15, 2006 was the last day I drove to Muskingum College. I quit that day. I couldn't handle the classes.. The thoughts.. The drive.
I thought that was it. If I just avoided that, I would be fine..
Turns out when you give anxiety an inch, it takes a mile.
I gave up on that.. Then I quit my job. That was too much as well.
Eventually, I just quit leaving the house period. A month passed and I didn't leave once. The fears consumed me. What if I panicked at the store? What if I panicked at a restaurant? What if I passed out?
I remember sitting in my room one night while the family went shopping and out to dinner. I was crying so hard because I WANTED to be with them. I WANTED a social life. I was so angry with God. I felt like He had left me.. He let me lose everything. I would pray and pray.. And I would just get worse and worse. I didn't understand.
I read a lot back then.. And that included every single one of Joyce Meyers books. In one book, she talked about how I was letting fear control me.. I wasn't controlling it... And every step I took to recover would make me stronger.
So I took baby steps.
I started going on walks around the neighborhood. I was still close to home if I needed to escape but I was building strength.
After that, I started going to the store with my parents, then restaurants, then out of town.
It was a slow process. It took me close to 6 months to get to that point, BUT I did it. That was the key!
My true test came when I met Ethan because I was moving completely out of my comfort zone. I was traveling to another city, alone, to meet someone I barely knew.
And you know what happened?
I didn't pass out. I didn't die. I didn't panic. I didn't have to go outside to get a breath of fresh air...
I fell in love.
Can you imagine if I would have let fear continue to control my life?
Where would I be? What would I have?
I was lost in this world of anxiety for a long time. I frustrated so many people. I think some might have even lose hope in me. I'm not sure.
But God didn't give up on me and I refused to give up on myself. I refused to keep letting fear steal all of the good in my life.
I had to get in the mindset that I was the one in control of my own fate. You get one life-- that's it! Do you want to pass away knowing you let something like fear take LIFE away from you??? I was breathing every day. I had life. But I was not LIVING. I was strictly surviving. That's it.
I am so thankful I get to LIVE now. I'm not perfect and I still have my tough days, but more than anthing, I find myself being grateful.
Thanks to overcoming anxiety and panic disorder, I have three gorgeous babies. I have a handsome husband.
As I was driving down the road yesterday with my three children in the back seat, I found myself crying, telling God thank You.
With His strength, I now drive 35 minutes to my daughter's speech and occupational therapy appointments. I drive 40 minutes for her evaluations. I have plans to take her to pre school every day. I run to restaurants.. Just the kids and me. We go to the post office. Just us..
I am living life. Finally.
I don't have the control of fear and dread and worry.
I am happy. And at peace.
I say all of this to just give one person hope. If you are struggling with the same thing, please hold on. There are better, beautiful days ahead. FIGHT for them. FIGHT to live! It's okay to admit that you are not okay right now. There's no shame in this and I don't want anyone ever thinking that there is. Everyone has their own battles.. This just happens to be ours.
But you are strong enough to conquer this and live.
Please don't just survive. Thrive. Love. Be with your family. Go out with friends. Try new things. Go to new restaurants. Travel.
This life is beautiful. Our children need us, our significant others need us.. We need us to be strong.
Links:
http://www.adaa.org/about-adaa/press-room/facts-statistics
Monday, March 2, 2015
27 Things I've Learned
Thursday, February 26, 2015
We're in Holland.
I teared up as I looked over her first year. I had videos of her crawling and walking. Pictures of her trying baby food for the first time. I even have a video of her saying 'Gigi.' I forgot I had that-- proof that she spoke and repeated words years ago.
When I got to her 1st birthday pictures, all of these feelings started rushing back to me. I feel like that was the moment I knew-- I knew something was.. different. I wouldn't admit it then, but looking back now, I had that pit in the bottom of my stomach. She cried the entire time we had her birthday party. 11am-12:30pm. I wrote it off as she was just tired or she was just a baby, but, she was miserable the entire time the 80+ people were in the room.
She eventually fell asleep and woke up an hour later.. after most of the people had left. There were about 15 people sitting around, waiting for her to do her smash cake and she was fine... peaceful. We all kept saying 'The nap did her well...' but even then, I just felt 'off.'
For her 2nd birthday, she melted down as well. Once again, we said, 'It's 1PM.. time for her to sleep' and she did. She slept through her birthday party yet again. Maybe it was some kind of coping mechanism for her? I'm not sure.
But I feel like, looking back, even in those moments so early on... I knew.
And here we are, almost 4 years later.
4 years since she came in to this world and was the prettiest thing I'd ever seen ( only until her gorgeous sister was born almost exactly 2 years later.)
I read a poem the other day that someone shared with me called 'Holland.' If you've never read it before, HERE is a link. It's definitely worth the read-- makes you think. So many people say, 'I don't know how you do it' or 'How do you handle all of this' or 'Was this diagnosis hard for you to hear'... And I never really knew what to say. Then I read this and it all made sense.
In this poem, the author writes:
"... everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."
This sums it up.
It's been a month and a half since we heard the words that our three-year old is on the Autism Spectrum, but in reality, we have known deep down much longer.
However, since hearing the words, my processing has been different. Where once I looked at my 3-year old, and as terrible as this sounds, I 'analyzed' her.... things are much different now that we have seen a doctor and heard the words.. choked them down.. out loud.
As I always say, when I write all of this... I'm not saying we have accepted defeat or that our world is over. I'm just explaining how my feelings are in this process...
Now, I find myself in a constant battle between feeling a sense of pain when I see a 3 almost 4-year old carrying on an entire conversation with their parent or a stranger and feeling hope that that will be my three-year old one day. I'm in a constant battle between feeling bad that I wish my three-year old could communicate with me and feeling happy that my three-year old is healthy and safe. I'm in a constant battle between not understanding why she has to go through these obstacles to do every-day tasks and feeling strong enough to overcome them.
My mind is in a constant battle and some days I don't know whether to cry, be brave, write a happy blog, or write a blog that displays my raw feelings.
I find myself swimming in this sea of anger... faith... fear... determination...
How is that possible? That I could have faith and be angry all at the same time.
I was raised in church, so trust me when I say, I know His Word like the back of my hand. I know that we aren't supposed to question God and that all things work for good to those that love Him. I know He has everything in His hands and that He doesn't give us more than we can handle. I know that He designs us from the womb and we are crafted perfectly in His hands... I don't doubt any of that and I still believe every word with all of my might.
However... my human side... the side we all display, comes out. Jesus even got angry.
My human side. The side I try to hide from every one.. it shows at times and I find myself crying and feeling upset... hurt.. lost... mad even.
My daughter will go on to live a thriving life because we have such an amazing support system and she is a driven three-year old. HOWEVER, I still look at our situation right now and wonder 'What will 10 years from now look like? Will she talk? Will she comprehend what people say? Will she be able to go to the bathroom on her own? Will she be able to write? Will she be able to use a fork and a spoon? Will she go to school and have friends?' The faith in me screams: YES. Yes she will do all of these things!! But my heart, at times, fails me and I cry inside thinking 'What if she doesn't.?'
When I gave birth to her almost 4 years ago, this thought never even entered my mind. That I would have a child that cannot communicate with speech. That I would have a child that doesn't look me in the eyes or understand simple commands. A child that doesn't yell 'Bye Mommy, I love you' when I walk out the door or welcome me with a hug when I walk through the door.
When you have a baby, you never picture that. You picture them learning new words, having new milestones, potty training, starting kindergarten... all of it working together, flawlessly.
Then life throws you a curve ball and you find yourself going to meeting after meeting to set your child up in a special education preschool... and you're running to speech therapy appointments.. and occupational therapy appointments.. and sometimes driving there, things weigh on you, and you say in your heart, 'I didn't picture it being like this.'
No, I didn't picture this-- I pictured Italy, if we are being honest. I didn't picture Holland once. But, we are in Holland now.... and it's a different world than what I had imagined, but our bags are packed.. and we are ready for the trip.
This might not be what I pictured, but it doesn't change the depths of my love for her or my determination to do whatever I have to for her to flourish in every possible way. I see how smart she is in the little things she does-- the progress we make. She has more persistence than some adults. I knew that the moment she was born...
... We just have a different path to take, a different journey. Not a less beautiful journey. Just different.