Saturday, December 9, 2017

My Own Polar Express-Part 2: Does Seeing Always Mean Believing?

Do you have to see to believe? For most children with Autism, the answer is more often than not, "Yes."
Continuing from my previous post...
Just like the Hero Boy in the Polar Express, we all have to grow up one day. My life went on. I grew up, went to college, married my childhood sweetheart and started a family, but I never forgot that magical Christmas Eve. I shared this story with my husband many times through the years and we both agreed that when we had children, Santa would visit them as well.

The dilemma for us would first come with our families. There were some in our family who did not have Santa visit their home. I understood why and I had no problems with it. I’m a preacher’s kid. I get it. I know the true story of Christmas and there was never a question that my children would know it as well, BUT I wanted my children to have Santa, too. Santa was that important to me.

When Taylor was first diagnosed with autism, we came across our second dilemma. One of the things that his therapists worked on was helping Taylor learn how to use his imagination. If you have a child on the spectrum, then you know. Everything is literal. Imagination is hard. During his many therapy sessions, his speech therapist worked on this with him. One of the many ways was trying to help Taylor imagine an object was something else. My husband and I would do this with him as well whenever the opportunity arose.

For example, I would get a banana and pretend to use it as a telephone. Yeah, most of the time Taylor would just stare at me and then want to eat the banana.

Imagination and pretending are a part of childhood and something that most parents just take as a given. Pretend play didn't happen often at our house and proved to be very difficult for Taylor. He saw things as they were and that was that. This brought up a HUGE concern for me, something that I never thought would be an issue to teach my child. Like I mentioned before, I am a preacher’s kid and I just assumed my children would come out of the womb knowing who Jesus was...who God was!

Let me ask you something. Can you think of anything more abstract? How was I going to teach Taylor about Christ’s love? Even bigger than that, how was I going to ever be able to teach Taylor about God? Taylor can’t see Him, can’t touch Him, can’t go visit Him. Taylor can’t even call Him on the phone and hear His voice.  HOW was I going to do this? I had faith though and I prayed that God would show me.

I put it in His hands. I would know how to do this when the moment was right.

Taylor was just 9 months old when we took him to visit Santa for the first time and began a tradition that would last for years to come. He was so adorable! He actually laughed when Santa put him on his knee. No tears from Taylor, he was never scared of Santa.

I believe it was the Christmas when Taylor was three years old that God showed me the "right moment". It was like an epiphany...Santa could teach Taylor how to believe!

Hang with me here.

With Santa, here was someone Taylor could see. Someone he could touch, someone he could visit. He could even call him on the phone and hear his voice. No imagination there BUT here is where it came in.

What did Santa do the rest of the year? What was he doing during summer break? How did he get around? Did he always fly a sleigh? Where did he go on vacation? Did he walk his deer? What did the elves look like? What about his shop? How did the reindeer fly? Did they go into outer space?

And so Taylor began to IMAGINE. He was non verbal as a toddler. I think his total of words by the time he was the age of three was holding at around 40 words but he would draw pictures! Oh my goodness! What a beautiful world I discovered through Taylor's drawings.

No, this wasn’t turning a banana into a telephone, it was bigger than that. He was beginning to imagine and draw things that he never saw in real life. He was using his IMAGINATION!

The years went by and Taylor's creativity grew. We were still not on the communication level to have a dialog about God but I felt in my heart that Taylor knew Him. Then one day on the way home from church we heard from the back seat, “Jesus lives in my heart.”

My husband and I, together. - “Yes, Taylor! Yes, He does!”

Taylor meant it. He wasn’t just repeating something back at us. To tell you the truth, I think Taylor understood what that meant better than any adult I have ever met.

In all honesty, Taylor taught ME who God is. He is still teaching me.

My boys are older now and Santa has moved on to share his magic with other boys and girls but my boys still believe.

Santa gave Taylor an incredible gift, not me, not my husband...Santa! The gift of imagination. That one thing changed Taylor's world. It helped him through some really tough times as well. A perfect example was how it helped him cope with the death of two of his grandmothers. Santa taught Taylor how to imagine which allowed Taylor to envision Heaven and what his MeeMaw and MadaWane are doing even now as they sit up in Heaven.

Please understand, this is not a post begging you come to Christ or push my beliefs on you. It is about my family's life. It is about how my husband and I found a way to teach our autistic son about the love of God, who Jesus was, what He did for us and how the magic of Christmas lives in all of us. I am not saying this is the only way or the right way, but it was the right way for us.

I do hope this post blesses you all and remember, Santa is real!

You just have to believe.

Friday, December 8, 2017

My Own Polar Express-Part 1: Finding the Magic Again.

I grew up with Santa. I LOVED Santa and I remember as little girl sitting in my bed on Christmas Eve anticipating his visit. We moved often when I was growing up, so Santa had to find us in a different place each year. Every year I wondered, “Will he find my sister and me again?” “Did he get the letter I sent?”

He always found us although I am still not sure about my letters.

I remember on each Christmas Eve lying awake in bed thinking of ways he could get inside our house even though we didn’t have a chimney. I always thought of a way. I had a very vivid imagination.

In the fourth grade, I became very curious and skeptical. I wanted to know more about Santa, so I looked him up in the encyclopedia.


POOF! The Santa magic was lost...much to my mom’s dismay as I insisted on discussing the matter of my discovery in a car with my seven-year old sister wailing in the back seat. Yes, I destroyed the Santa magic that year for my sister as well.

That was a sad Christmas for me (and my sister, oops!). I felt a little betrayed, although I think I had known the truth for a while. Why did my parents lie to me? Still, I missed the magic and the anticipation of Christmas Eve. I was torn. I think I was more upset that it wasn’t real...or was it?
One year all of that changed and I learned who Santa really was.

I was 13 years old. Practically a grown up in my eyes but that was the year I discovered that Santa was really real.

At the time my sister and I lived with my mom, who was single, working and in school...i.e. Poor.
We were poor.

My mother had bought my sister and me three presents each for Christmas that year. My mom was so excited because this was the first year she had been able to get us what she really wanted to. Since our house was small and there weren’t many places to hide gifts, she went ahead and wrapped them and placed them under the tree many days before Christmas.

I would walk by those presents every day and just thought I would go crazy waiting for Christmas Day! If  you're wondering, I was the kid that loved surprises, so no, I never peeked.
Then it happened.

We came home one night to find our house had been broken into.

You guessed it, all our presents were gone.

I don’t remember crying, although I am sure I did, but I do remember seeing my mom cry. She cried hard. That had been all that she could buy us that year and it was gone.

I remember my best friends family immediately wanted to help. My grandparents as well.  As appreciative as my mom was, it was still a hard time for us.
The presents were replaced by loving friends and family. We were all so grateful and I learned first hand how giving to others in need can make a huge difference in someone’s life.
But my lesson wasn’t over. On Christmas Eve,  as we were sitting around watching a Christmas special, we heard knocking on the door.

This wasn’t the best neighborhood that we lived in so, to say it startled us would be putting it gently. Especially in light of the circumstances.

All three of us got up to see who was at the door and received the greatest surprise!

There standing on the front porch was Santa and two of his helpers! He had with him a huge bag of gifts! I tried to see who these people REALLY were, but I had never seen them before.

It was Santa and his helpers! THAT is what I knew and still to this day that is all I know. I don’t have any idea what the gifts they brought us were. Isn’t it funny how that stuff goes away? What I do remember is the moment we opened the door on Christmas Eve to see Santa and his helpers standing on our front porch, that feeling of joy and the love we felt from those three strangers standing at our door.

That was the year I rediscovered the magic of Santa and knew without a doubt that when I had children one day, they would experience it as well.

Santa was real! His magic was real! be continued.

Thursday, October 26, 2017

He Makes Us Better

What an emotional week it has been!

I have a Freshman and a Senior this year, both of which are in the Marching Band. Over this marching season, I have watched these two boys grow closer and closer, their bond grow stronger with each other.

What does any of this have to do with Autism?

Hang with me just a minute.

It all came to an extremely emotional moment the other night. It was Senior Night and the band was playing one last song, “Amazing Grace”, to the Seniors at the end of their last home game of the season.

Tears were everywhere! So many kids were crying. We have 47 Seniors this year...that’s a lot of friends leaving.

I was expecting to see Brendan, my Senior, emotional. What I was not expecting was to see my youngest son, Jordan, falling to pieces.

I looked across the field to see him standing there crying so hard. Brendan made his way over to him and they stood in a bear hug for several minutes while Jordan cried on his older brother's shoulder. The love between them was moving to see. I'm pretty sure my heart exploded.

For this momma here, it was the answer to another prayer from long, long ago. A prayer that my children would be the best of friends. For something I never really had.

I have a younger sister and a younger half-brother. Growing up, it was just the three of us but we didn’t have that bond that I know some siblings have. It wasn’t horrible, I mean we had fun, but we were not buddies. My younger brother is 6 years younger than me so we just didn’t have much in common as kids. For the most part, I looked after him and entertained him and his job was to make me crazy.  My sister and I just clashed. We constantly fought...even as adults.

This is what I thought was normal. Siblings argue, tell on each other, fight, steal from each other and make the others life miserable, topped off with a few laughs and fun times in between. That was my normal.

When my youngest son was born, I was ready. THREE BOYS! My husband and I joked that our peaceful quiet days at home were gonna be on hold for the next 18 years or so.

We wondered what it would be like to raise three boys full of energy and spirit. Would they get along like my husband and his brother do? Would they just hate each other or would they fall somewhere in between?

I wanted them to have a good relationship with each other and I prayed that would happen. I was concerned, though. They already had a few more challenges facing them than most families do. Their older brother has autism. Would this make their life harder and add more stress?

Just add this to another thing that I worried about.

I didn’t know what life would be like for these three boys. Turns out, I didn’t have anything to worry about at all.

This is what happened.

My boys learned acceptance. My boys learned that everyone is special. They learned to stand up for their friends and loved ones. They learned it was okay to be different.

They have never viewed Taylor’s autism as a disability, he is just Taylor. He is their big brother.

Even at a young age, they understood what made Taylor tick. What would make him laugh, what would upset him, what kept him calm and what got on his nerves.

Don’t misunderstand. They all three still pester the crap out of each other, but they also know when to stop. Other than that horrible biting stage when Taylor and Brendan were toddlers, they have never physically hurt each other intentionally. I don’t even think they have intentionally hurt each other's feelings, either. Now I KNOW this is not normal, at least it wasn't for me and my siblings growing up.

Brendan and Jordan never had those “brother fights” I had prepared myself for. Certainly nothing like the fights my sister and I had. I remember one time when I was fourteen, I found out my sister had taken an outfit of mine without asking and then me trying to drag her up the stairs in a headlock demanding my clothes back. (I’m not the only one, right?)

This kind of thing has never happened between my boys. I am so happy that this is true but I am not really sure that is the norm.

I know my kids are not perfect, but to me they are perfect brothers. I can’t take credit for it, though. I didn’t make them this way.

Taylor did. All with his brothers completely unaware.

Taylor changed the whole dynamic of our family. As little boys, Brendan and Jordan would never fight it out because of how it would be for Taylor. They knew that it could cause a meltdown from Taylor and they never wanted to upset him that way. They wanted him to laugh and be silly. They wanted to include him and they did.

Taylor is a funny kid and his younger brothers wanted to be with him all the time when they were little. It wouldn't be until much later that they would understand why Taylor didn't engage with them as much as they wanted him to.

Taylor has taught them how to see the world through someone else's eyes. They often think of situations from the perspective of  “How would Taylor feel?” and as a result are much better at thinking out their actions first and how it may affect other people, not always, but more times than not.

They have learned patience. You tend to learn patience unwittingly when you have a brother that loves to repeat all things such as watching the same movies over and over, telling the same jokes again and again or asking the same questions when you know he knows the answer. You get the idea.

These two boys have sacrificed a lot for Taylor. If they ever needed an excuse to feel left out or resentful of their brother taking time away from them, they had it. The early part of their young lives was filled with all of us trying to get Taylor to talk and engage with us. Yet, they never complained once in all the years about being drug along to all of Taylor's speech therapies, social therapies, horse riding therapy and that entire summer with the hyperbaric chamber.

There were so many nights that I had to spend alone with Taylor locked in my room so he could focus on his homework without any distractions. Not once did they complain that I wasn’t spending that time with them. They understood that this is what Taylor needed.

Pretty soon, Brendan offered to help Taylor with his homework and he WANTED to help him.

Jordan would go walking with Taylor when he walked the dog so he knew Taylor was okay and I wouldn’t worry.
Taylor is a wandering ninja. He has a terrific tendency to be standing next to you and the next second be gone. "Poof!" I cannot count the number of panic attacks I have had with that kid because of this vanishing trick of his. Anyone who has spent more than 5 minutes with him has experienced this with him. He is almost 21 years old and he STILL does this!! Whenever we would go out to places, it was unspoken between Brendan and Jordan to keep an eye on Taylor. For example, when I would pay for the groceries. If I let go of his hand for a second, his brothers would move in. Taylor never ran off, he knew people would notice that. No, he GHOSTED and many times it was his brothers that would grab him before he could do his disappearing act. Much to Taylor's dismay they still do it. Old habits, you know?

No one asked them to do these things. They just did it. I know that this sounds like a lot of mom bragging...and it is.

This blog is dedicated to telling the story of life with Taylor. My goal is to give hope and maybe inspire another mom or dad out there who has a child on the spectrum. Brendan and Jordan have even given me suggestions on things to write about. The thing is, they are just as important and intricate to the story of Taylor. They are his support system. They are his advocates and I feel it is important to express how special they both are.

This post is for them.

That night at Senior night, I saw the result of two boys that had something more in common than just being the brothers of Taylor. That hug wasn’t forced. They didn't know their dad and I were watching the moment. It was real and raw. The evidence of their love for each other. Did I ever hug my brother or sister this way? Sadly, I am not so sure, but seeing this moment manifest in front of me was almost too much for me to take in! My prayer answered. Thank you, God.

Some people may look at our life and feel bad for us. Actually, I know some people do, and to you I say, “Don’t”.

I can’t imagine our life any other way. God knew what he was doing when he blessed us with Taylor.

Taylor taught us compassion.

Taylor taught us acceptance.

Taylor makes us laugh.

Taylor makes us think outside of the box.

Taylor makes us better. ...and Brendan and Jordan make Taylor better.

Thursday, September 14, 2017

Does He Know?

My son is a bright young man. He is funny with a dry sense of humor. He has artistic talent and he is a good brother. He is twenty years old with a great job working in the ER at the local hospital.

He also has autism.

Does he know?

I ask myself this question from time to time. Does Taylor know he has autism? He knows he is different and that there are things he may never get to experience, like have a group of friends, driving a car at 16 or, most recently, moving away to college. Does he understand why?

When he was eight years-old, something remarkable happened between the two of us. At the time, Taylor was still struggling to communicate with his words. He had such a hard time articulating his thoughts and feelings. If something upset him, he was unable to tell us why or even what it was.

This was one of those first.

It was a lazy summer morning and his younger two brothers, Brendan and Jordan, had been watching the Cartoon Network. Taylor had no interest in watching with them so he stayed in his room drawing with his computer.

As the morning went on, Taylor would come out of his room and just yell at his brothers and start crying. I had no idea what was going on and it seemed very sporadic. His brothers weren’t bothering him but something clearly was. I would turn down the TV, sit with him for a little bit and calm him down. As it continued to happened, he started to cry and it finally progressed into a full blown meltdown.

I have mentioned before that being a parent of a child with autism feels like being part detective. This was one of those instances. I was struggling here. What in the world was upsetting him?

Then I began to see the pattern.

My other two boys were watching “Fairly Odd Parents” and it seemed like every time the dad came on and began to talk, it would set Taylor off. I finally realized that it was the dad’s voice that was upsetting him. I had no idea why that would be, but it was definitely the culprit. We changed the cartoon to something else and Taylor instantly calmed.

Crisis averted, I felt pretty great that I had figured out the problem. Go me!

About 20 minutes later, Taylor walked into my bedroom, looked at me and said “I need a new brain.”

For a moment, I just stood there looking at him. My child had just rendered me speechless. First, in the most perfect sentence, he spoke directly to me and told me what he was thinking. After the initial shock of that little miracle, the impact of the sentence struck me numb.

This was the moment that I knew Taylor understood he was different. What made my heart break and threatened my tears to flow, was that it was obvious he didn’t want to be different...he wanted a “new brain”.

Coincidentally, the week before I had picked up an issue of “TIME” magazine in which they had published an article about the differences between the brains of autistic individuals and typical individuals, complete with CAT scans. I still had this magazine somewhere and at that moment I knew that Taylor needed to see it.

I told him that I had something to show him and so I dug out the magazine and we sat down together in our overstuffed chair. He seemed as eager as if I was going to read him his favorite Dr. Suess book.

Opening the magazine, I said “Taylor, you do not need a new brain. Your brain is just different and it works in an amazing way.”

Taylor replied in his sweet little voice, “Well, let’s see.” and began looking at the pages.

Once again, I was speechless. We were having a conversation! I had to hide my tears or I knew the magical moment would be gone.

So we began to read the article. I don’t know how much of what I read to him he really understood but he was completely enthralled with the CAT scans images.The CAT scans showed what parts of the brain lit up in response to different stimulants, such as seeing a familiar face or seeing something scary. I simplified it very much and I explained it to him, saying “This brain is what your brothers brain looks like and this one over here is what yours looks like. See the colors? The three of you have all those colors, but yours are just in different places than your brothers.”

Completely satisfied, he closed the magazine, hopped up and went back to his room. The moment was over and he was suddenly in a great mood again.

Did we just have a break through? I sat there for a long time filled with a whole range of emotions and a whole lot of hope.

Needless to say, Taylor was still Taylor and he continued to progress at the same rate he had been, but for that 20 minutes as we looked at that magazine together, I knew that Taylor understood a lot more than I realized.

Did he understand it was autism that made him different? Did he know he had autism?

As he grew older, he would still have those moments. Moments where he understood he wasn’t the “same” as his peers.

It was hard watching him realize that he didn’t have the friendships his brothers had as he watched them walk out the door to go to sleepovers or parties.

I am blessed, my younger two boys have never treated Taylor as anything other than their big brother. I don’t think they realize how special they are or how thoughtful. A great example is how they handled the sleepovers. Most of the time, they would invite their friends over here, and while Taylor may not have “hung out” with them while they were here, he still felt like he was a part of them. He felt included in the way that only Taylor can feel included.

Did Taylor understand it was his autism that made it harder for him to make friends? Did he know?

When Taylor graduated from high school, we went through this once again. He watched his friends move off to college and it was so apparent he wanted to do that as well. Not school, mind you, Taylor was done with that! School was hard for him and he was happy to graduate. No, it was starting the next journey that he realized he was missing out on.

His friend since they were born (as Taylor told me one day), Rebecca, had been accepted to Auburn and Taylor came home one day and informed me that he and Rebecca were getting an apartment together and would live in Auburn. (Rebecca was pretty surprised to hear this too, but she thought it was really sweet)

I said, “Taylor, you said you didn’t want to go to college.”

His reply, “You don’t have to go to college to live in Auburn.”

Touché my son!

Did Taylor really believe he was getting an apartment with his friend in Auburn? I don’t think so. I think he was just enjoying his dream out loud. A dream to be normal and to be able to do the same things as his friends.

Did he understand it was because he has autism that this opportunity will most likely never happen for him? Did he know?

Recently, Taylor has been very concerned that we are already close to the end of this year. He has said many times, “I can’t believe it’s almost September!” or “Can you believe that 2018 is almost here?!”

My husband and I began to realize that this wasn’t just your, “wow, time flies” kind of comment. Taylor wasn't just trying to make conversation. That's not really Taylor. No, Taylor was really becoming stressed about the year 2018.


Last year, I know that right before he turned twenty, he became really stressed. He told me he wasn’t ready to be twenty. One day he asked me if he would go to heaven when he died. He was already thinking about how he would be old and die one day.

“Holy crap!” I thought. He was really, really concerned about turning twenty!

My husband and I had a suspicion of what may be on his mind and sat him down one day. We asked him if he was nervous about turning twenty and he vigorously nodded his head, yes.

“I have butterflies,” he told us.

I asked, “Are you nervous because you are going to be a grown up?”

“Yes,” he replied.

My husband said, “Taylor, you know you can live with me and mom for as long as you want to. You don’t have to move away. You can be a grown up and still live with us, okay?”

Suddenly the tension seemed to melt from him and he was okay again.

This time was a lot like that.

The thing is we had already told Taylor he could always live with us, but I thought, maybe I need to remind him. I would also remind him of the fun things we were going to do in 2018 as well. Let him know 2018 was something to look forward to.

So, as I was driving him to work the next morning, I broached the subject. I reminded him he never had to move away and he told me he already knew that.


Then I asked him, “Are you nervous about it being 2018?”

“Yes,” he said, “I have butterflies.”

So I told him, “We are going to do fun things in 2018, right? Tell me what we are going to do.”

He said, “We are going on a Disney Cruise.”

I said, “That’s right!”

Then he said, “And then Brendan is going to move away.”



What an idiot I am. How could I have not thought about that?

His brother has been looking at colleges for the past 6 months and in just a few more months will be graduating from high school and going off to college.

When I moved away for college, my sister was all “Bye Felicia!” so maybe that is why I never thought about how Brendan moving away would affect his brothers, especially Taylor. That doesn’t mean I shouldn’t have thought about it.

There went my “Mom of the Year” award.

This is going to be really hard for Taylor and it is going to shake his world. Brendan moving away will mean a lot of things. First and foremost will be that Taylor’s order, routine and normality will shift around. Big time!

It will also be another reminder to Taylor that once again, he is being left behind.That once again he is different and will not be able to have that same experience.

It breaks my heart.

Does he understand it is because of his autism? Does he know? Does he understand?

I think the real question is, does it really matter? It doesn’t change how Taylor feels.

I know that Taylor will adjust as he always does. It will take some time, but he will overcome it. He will continue to surpass all the expectations even as he takes the knocks and blows that life has and will deal him.

In this way, Taylor is just like everyone else.

He may not face the same stresses and challenges we all have in life, but he has them.

He has all the colors, just in different places and he will succeed in all those different places.

I know he will.

Wednesday, August 23, 2017

Transitioning - Elementary School to Intermediate School.

When Taylor finished the third grade, I remember feeling so proud of him and so scared for him at the same time. Since he started in the Eclipse class when he was only three years old, he had been at the school for five and half years. That is a really long time for an eight year old.

I knew the teachers and staff there and I knew they loved him and wanted to best for him. We were extremely blessed when we moved to our little town because it was the absolute best place for Taylor.

Now he was going into a new school, though. He would be in a completely new environment with teachers that I didn't know and that didn’t know him. There would be a whole group of kids coming from other schools who hadn't been growing up with Taylor since they were four and five years old. Would he be bullied? Would the teachers understand his quirks? Would Taylor be okay?

I didn't realize it until then but I was spoiled. After Taylor’s kindergarten year, I never worried as much about how his teachers or peers would treat him. I never worried if he would be ignored or dismissed. I knew everyone loved him there, but now? Now, I was scared.

A friend of mine, who also has a son on the spectrum, gave me some advice and it is the best advice I think I could have had.

It was a very simple thing but nerve wracking for me, none the less.

She suggested that I call a meeting and meet with his upcoming 4th grade teachers (he would have two), his resource teacher, his aid, his speech therapist, his principle...basically, anyone that would be working with Taylor at all. I wasn’t sure they would meet with me. As far as they knew I was just “another helicopter mom”, and I knew absolutely no one at that school. The last thing I wanted to do was go in there with all these demands and make these people dislike my child before he had even started school, but my friend said she would go with me to the meeting as moral support and that eased my mind.

Looking back on it, it is so strange how worried I was about that meeting. It would be this meeting that started my yearly teachers meeting before EVERY school year after that with Taylor’s teachers.

My advice to you?

DO THIS! There is no way the teachers can know everything about your child.
Make a list of things you think are the most important things for that teacher to know and understand about your child.

What cues are helpful?
What things are difficult?
What can cause a meltdown?
What can CALM a meltdown?
What makes them happy?
What cause them stress?

Your list could go on.

Let the teachers know that you are their best ally and that you need to know what is going on at school so that you can help them help your child.

Taylor had a notebook that he brought home every day with notes to me from his teacher. In fourth grade it was absolutely necessary because Taylor still wasn’t able to tell me about homework instructions or about field trips or money he needed for whatever. It also allowed me to let his teachers know if his day was starting off bad because his backpack strap broke or it was thundering outside.

These notes helped give a little more insight to the teachers about Taylor and it helped me to put my trust in his teachers.

It is such a small thing. You're not asking for an essay from the teachers and they aren't expecting one from you. I wouldn't advise you to write one either. The teachers time is just as valuable as yours and they have other students as well. Short and to point is enough and goes a long ways.

Will there still be bad days and speed bumps? Absolutely, but hopefully these little things will help make their school year better, for them and for you.

Thursday, July 13, 2017

One Day at a Time

Transitioning from having a child with  Autism to having an adult with Autism has been quite a journey for me.

From the time we received Taylor's official diagnosis when he was a toddler, my focus was on the task at hand. There was always a challenge in front of us and so we really never had time to think about “grown up Taylor”. We we're too busy focusing on “toddler Taylor” and “kindergarten Taylor” and “elementary school Taylor” and “Oh my God, what will happen when he goes to middle school Taylor”.

I think it was during his 10th grade year in high school that it began to sink in that Taylor was about to be in the real world. Somehow it snuck up on me and I wasn't ready.

Knowing what I know now, would I have been able to plan better for Taylor’s life as an adult?

That is something to think about and something that I HAVE thought about.

The answer is simple. I don't know.

Would I have been able to do anything else differently?

I admit that I wish I had known then what I know now. I may not have wasted that whole summer sitting in a hyperbaric chamber when he was twelve years old.  Maybe I  would not have changed his daycare when he was two years old or waited until he was five years old to teach him how to swim but overall, I don’t think I could have done anything much different because the knowledge wasn't out there. We were on our own and learning as we went.

It is very easy to sit here behind this keyboard and tell moms and dads to plan for the future of their child but in my opinion, that is much easier said than done. I mean, plan how?

The most important and obvious reason it is hard to plan their future is that every child with autism is completely different. Taylor has High Functioning Autism and that left a lot of question marks about his future. There were so many ways he could have developed and progressed (or not progressed). I soon realized that I couldn't look at how other people with the same diagnosis succeeded because, like I said before, they were all different.

Now, there are some things I could have been better prepared for I guess.  Things I never thought about when Taylor was little, like the fact that my husband and I would have to go to court to become his legal guardians as soon as he turned eighteen. When I learned we had to do this, I was caught way off guard, "I'm his mom! I don't need a court to tell me I can take care of him." Right?  Um, no. That's not how it works.  We also didn't think about Social Security for him as an adult until it was brought up in an I.E.P meeting when he was in high school. These were things that were never on our radar, things we didn't know we needed to explore. There was no one to tell us any of this so I am passing it on to you now. Now you know.

When Taylor was little, I'll admit I spent a lot of my thoughts on imagining Taylor as an adult with little to no signs of autism. I had read all the feel good stories about the autistic kids that grew up to become doctors, professors, artists and writers with spouses and happy children. I dreamed this would be my son's future, too.

At the same time, I also spent a lot of my time in those early years praying each day that nothing would happen to me or my husband because who would take care of Taylor if we were gone? I don't just mean young Taylor, I mean 40 year old Taylor. As much as I dreamed of him becoming the next Temple Grandin or Thomas Jefferson, I also worried about his future life. What if he never talked, interacted with others or was able to live independently? It was very scary to think about that and worrying about it did me absolutely no good.

So, as a mom with a two year old with autism, I focused on what I could do in that moment. First on the list, teach Taylor to talk.

Next was to teach Taylor eye contact. Then we taught Taylor how to express his feelings using his words. When Taylor finally started talking, I focused on the next hurdle, teaching Taylor how to socially interact. (We still work on that)

I had to take each step one at a time. That doesn't mean I always wanted to. It was easy to daydream about where Taylor would be in the next year. But I found that if I got too ahead of myself, daydreaming about what his life could be, I would go into that place I call the “What if” place. That “What if” place is a dangerous place for me. I would find expectations there only to come back to the real world and realize they would be unfulfilled. That was never fair to Taylor.

I needed to celebrate with him in the moment of the current goal he had achieved. I couldn't allow myself to think past the current goal, much less what we would be doing in 15 years.

We continued to focus on each moment, the task at hand that day, not the years in the future. I made sure I did everything I could to make success for Taylor a very real thing, not just something I sat and dreamed of for him.

As the years went by, each goal became a bigger one for Taylor. Soon, the goal was to graduate high school with a Standard Diploma. Something I never had time to even think about when he was a toddler, because we were too busy learning to talk and read and make friends.

Now his current  goals are to be successful at his job and to learn how to drive alone (which he is working very hard on). When he has mastered those, he will add a new goal.

Let me say this. You have one advantage that I didn't have all those years ago.

Information. Information. Information.

Use it! Research and then log that information away.

Read the blogs. Read the books. Go to the seminars.

Meet other parents with children (or adults)  on the spectrum.

Listen to their stories and use that knowledge and experience to your advantage.

Most importantly realize that one day your child will be a grown man or woman and they will still need you.

And in this moment, allow yourself to enjoy that first time your son or daughter uses their words without worries of tomorrow. Enjoy that first picture they draw for you or that new song that they learned to sign for you.

I guess what I am trying to say is that it is okay to just focus on this day. You are allowed. Be in this moment and savor all the blessings that come along the way. That's where they learn. That is where they grow. That's where their potential is discovered. In that moment with you.