I Was Unprepared

I was not prepared for the day my precious boy would ask,

"Was it hard for you because of my autism?"

Such a sweet boy💙

What a great question to ask and to help spread awareness! Very insightful, too. I wonder if it's because we just got back from our high school transition IEP meeting or because he can see mommy is barely holding on by a thread, but the short answer is, Yes.

I asked what made him think of that and he said, 'I just did.' So we talked about what autism looked like for him, before it was his diagnosis. We talked about how he had to learn to jump, run, button his shirt, or draw a stick person. We talked about his struggles to communicate his wants and needs. We talked about his big emotions even at a young age, and how he couldn't express what those emotions meant. There were a lot of meltdowns, tears, and guesses. There were a lot of times I didn't know how to help him. That was the hardest part.
I told him it was hard to watch him go through everything that he did. It was also hard to see him struggle and try to learn things that came so easily to neurotypical children. It was hard not to get the answers we wanted, time and time again. It was hard to hear doctors say that he wouldn't make it through one day of kindergarten. It was hard to hear them say medication was the only way to help him.

It. Was. Hard.

All of it.

For him and for me. But it was absolutely worth it and given the chance, I would do it all over again. There was a lot of learning; for both of us! His struggle made me become the mama bear I am today. Ignorant people, medical professionals even, who refused to listen to me, taught me never to doubt myself or what he is capable of. And look at the milestones he's already overcame in life. He has proved them wrong so many times over the years. As he moves forward at school and in life, so many people assume he can't. I sit back and let them underestimate him. I quite enjoy saying, "I told ya so."

The story I would like to share about awareness is not just one about an invisible disability, it's also one about a mama struggling to help her child. I would remind her that while some days are going to be hard, there will be victories. I would remind her that progress is progress, no matter how small and that each day, month, or year, gets a little easier. One day, she will be the voice of encouragement for a mom who just received a diagnosis for her son, much like someone was for her.

And all that sweet boy, newly diagnosed needs to know is that people will still love him no matter what. And one day, he will overcome whatever obstacle is in his way. I know that, because he will have a mama standing right next to him. She will catch him when he falls and stand back with tears in her eyes when her baby boy can finally tell everyone, "I told you so."

Choose to Be Kind: This World Needs It

    This world is not what it was meant to be. Never in all my years have I ever imagined a world where we would be fighting each other in our own country. What a sad time to be parent. How do I explain this 'civil war' of sorts to my children? How do I explain the violence and pain being brought on our brothers and sisters, simply because they do or think things that are different from us? How do I explain the hate?

    I'll be honest, I had just given up hope. I lost hope in our country. I lost hope as Americans. I lost hope in friends and family. We are hating, we are violent, all in the name of being heard. But in the meantime, we are losing our right to simply disagree. My parents always told me from a very young age, not everyone will agree with you and that's ok. I truly believe that. It is ok. In fact, in order to be an individual we should be able to think for ourselves, make our own decisions, choose where our faith lies. I don't know how that stop being ok. No, it doesn't always make you right but it does make you free. Which is what this whole country used to stand on. Now, because of this, the whole world is unfurled. No one seems to know it's ok to disagree with each other. I never thought I would live in a time where this was a thing. And so I lost hope. 

    Over the last few weeks I have felt so overwhelmed with all this hatred swirling around our country like a clogged toilet, waiting to see if it will flush or not. I had to get away from social media, the news (if you can call it that), and most human interactions. I was praying for our country, our counties, and each other but the answer never seemed to come. If I'm being completely honest, I wasn't really listening either.

    Then one day I was in a rush. I was getting ready for my son's birthday party. I had my daughter with me as we picked up cake, balloons, food and all the things from the grocery store. I had a schedule to keep and two armfuls of groceries (why do I never get a cart?!). As we raced around the grocery store, I noticed the checkout lanes where horrendous so I jumped in line at the customer service desk. The gentleman in front of me saw my armful and offered to let me go ahead of him, he said he could tell I was in a hurry. Poor planning on my part, doesn't constitute a problem on his part and all that, so I humbly declined. I could tell he must have just left work for the day and was visibly tired. Still, he offered to let me go ahead of him citing that I had someone important to get to. Again, I tried to decline but alas, he wouldn't take no for an answer. I thanked him profusely and walked past him just as both registers opened. So as it turns out, we both made it to the counter at the same time.

    Once we started the check out process, the man who was now waiting patiently for the cashier to work her magic, leaned over to me and asked who's birthday it was. 

"My son," I replied. 

"Aw," he said, "How old is he gonna be?" 

"He's turning 11," I told the man. 

He smiled, that older, wiser, knowing smile and replied, "That's a good age. You enjoy 'em when they're young." 

"Yes sir, I will."

A few minutes passed while he and I finished our respective transactions. But before I left, I wanted him to know that I appreciated his generosity and then told him that I hoped he had a great weekend.

"God bless you," he said and we went our separate ways.

On my way out to the parking lot, my daughter mentioned to me that she thought the man was very nice to let us go ahead of him. She was all smiles when she told me how nice people were. 

That's when it hit me.

My prayers had not only been heard but they were being answered. We lead by example. My daughter never mentioned that the man was black or that we were a different color then him. She didn't even notice. In her sweet and innocent mind, all she saw was the good and kindness in him and the mutual respect two people, strangers even, had for one another. That's what I want my children to learn. If nothing else, that's what I want to teach them. I want them to know that while there is ugliness in this world, you can choose to be light that people will follow. I want us all to be that light for each other; a city, a nation, the world even!

I'm no longer angry. I thank God for that experience. In my insistence that God step in and do something, it never occurred to me that He was using me to be the change. Though just a small part, if we all chose to love, to show love and kindness always, slowly the ugliness will melt away. So if you are like I was, disgraced at the world, disappointed in your fellow humans, let me tell you; never lose hope. I encourage you to pray. God answers prayers; just be patient. 

Sometimes all you have to do is listen.

Middle School

First Day of Kindergarten

I thought it would take longer to get here. I begged time to slow down. I bargained with God on how much time I needed with my boy before he moved on. Or at least I thought I did. As it turns out, He created a beautiful, smart, quirky boy with autism, ADHD, and SPD who has gone on to do great big things, hard things, and will not let his disability hold him back. Graduating elementary school, for example. But this boy. My creature of habit. My 0 to 60 spitfire. My cuddler. MY baby boy. How did you get to be 10 this summer, anyhow?

 I cannot believe you are going to middle school!

MIDDLE SCHOOL?!

YIKES! I can't even say the words without tearing up. I have been putting off writing about this for some 18 months because I simply refused to admit it. You are going to a new school with new teachers, bus drivers, classrooms, and friends. You will have everything you need except for the one thing you can't; ME. I'm not really sure who that's going to be harder on, me or you.

You've hardly been without me these last 9 years. Will you be okay with the change? Will you worry? Will you need me when I can't be there? Will someone lookout for you now that I can't? Will someone treasure those moments when you overcome a milestone? Will someone think to share them with me? Oh, how my anxiety takes flight where you're concerned, kid. I can't even imagine how you must feel! Change is your forever foe.

I have finally resigned myself to accept the change and to do the only thing I know how to do. Exactly what I've been doing these past nine years.

I'm going to pray.

Harder than I ever have before, I'm going to pray for your nerves, in situations unknown. I'm going to pray for the teachers that will work with you and that the bond between you will grow quickly and closely. I'm going to pray that you can rely on them to love you and keep you safe when I can't. I'll pray for you to stay focused so you don't get distracted or frustrated. I'll pray that your anxiety doesn't stop you from making friends or learning new things. I'm going to pray that you HAVE FUN! I pray that you'll laugh and not worry. Learn and not cry. Smile instead of frown. Routine is your calm; your center. I pray that you will find it there, too; that you will learn to be comfortable in this new, crazy world.

My son, you don't know this, but I worry about you all the time. Even when you're sleeping. I worry especially when you have a milestone on the horizon. I like to fancy myself a person that prepares for the worst and hopes for the best. And you continue to amaze me with all the things you can do. I know this will be no different. So while I'm dabbing my eyes as you go off on your next big adventure, just remember a few things: 1. You CAN do hard things because you have already overcome so much. 2. Normal is just a dryer setting. 3. I will be praying for you. 4. And most importantly, Mama loves you way too much and I will be waiting to hear all about your day as soon as you get home.

He's Going to Middle School!

Loss

Loss. It's such a small word but has so much meaning and emotion behind it. I'm not even really sure how to describe it. I do know it comes in all shapes and sizes. For example, you can lose a loved one, you can lose your keys, or when you're beloved car just won't start anymore. All different kinds of loss. All with completely different feelings.
Today, we lost our cat. It is quite a different feeling that when I lost my father some 18 years ago. Perhaps it was because I was much younger then. Or maybe because the loss of a human is different than the loss of one's furry friend.
Our crazy, nearly 12 year old cat, who was our beloved first pet. It was to be our first "baby" we adopted as newlyweds who now had cancer. A rapidly developing and aggressive form that completely took over her body in just a few short months. We never had to put a pet down before. It was a first for us. As adults, I don't think it was really any easier to handle. The inevitable is really all the same. She goes to the doctor and never comes back. Her food bowl gets put away. Pictures go up on a shelf.
It's the little things we'll remember now; like how she got her name, Vader. We were supposed to be getting a all black, male cat. Convincing my husband we should get a cat was pretty easy after we agreed he could name him. Imagine our surprise when we arrived to pick him up and HE turned out to be a tan and brown FEMALE cat. But the name stuck. So she became our "Vader."
There was also the time we thought she broke her leg as a kitten and walked around with a hot pink cast on that was bigger than she was. I lost count of how many times she chased our other animals away with a hiss or a growl if they so much as breathed her air. There were the times she would let my husband cradle her in his arms like a baby (only her daddy could do that!). We'll forever remember the way we taught her to say "Mama" when she wanted food. And I will forever tease my husband about how he was the only one who could make her purr so loudly from across a room and without ever touching her. Oh, and the way she would climb into the sink to drink water from the faucet...she was a unique cat, that's for sure!

Towards the end, she was a completely different cat. No spunk left in her to do anything. It was sad and hard to watch. We had a tough decision that had to be made. But it was time to let her go.
The only thing that could made this tough decision even worse was when we had to explain it to our 7 year old daughter and our empathetic 8 year old son who has autism. You think of things like death and as more of a human thing. People die and they go to heaven. Where does kitty go? (I for one am a firm believer that All Cats Go to Heaven, too; even this one.)

"Where is heaven?"

"How do we get there?"

"Can we visit?"

"When will she be back?"

So many unprepared questions. So hard to explain. For my daughter, it was just a matter of "When can we get another cat?" Not that she didn't care about this one, I think it was her way of coping with the loss; replace her and it would take her mind off it. But my son; my sweet, sensitive boy, only wanted his cat. He didn't want her to leave. If she has to go, he wants to go with her. So we talked about death, mourning, and grieving. And it started to sink in. I will never forget how just that afternoon, as he pet her at the doctor's office, he lovingly whispered that he was sorry she was sick and that she would be better soon. And now, he's petting her goodbye and his face just crumples. He runs to my lap and starts crying, telling me that he doesn't want her to die. There he sits for 5 minutes crying his eyes out. And there was nothing I could do.

Death is permanent. For some reason, we find that sad. Shouldn't we rejoice that we can move on from this world to somewhere better? Vader, or beloved cat, is now in heaven. Free of pain; not struggling for breath. She's running around with lost parents, friends, and other beloved animals just like when she was a kitten.

We'll miss you, kitty.

You will be remembered.

But most of all, you will always be loved.

RIP Kitty

Autism is Hard; Love is Easy

This week has been a whirlwind of emotion for my son who has Autism. That in turn, means it's been an equally stressful week for me. I follow the vlog of a fellow autism mom to a severely autistic little boy. In one of her most recent posts, she talks about how autism is forever; that she hates autism and what it is taking from her son and family. We let ourselves forget that sometimes. I know I do.
As special needs parents, we do see progress; some things get better over long periods of time. Sometimes it's little things. Sometimes we even start to forget how hard the struggle was to get where we are now. Sometimes we do forget that autism is hard. While my son's disability is nowhere near the severity of this woman's child, I too, can forget that autism is forever; it is a member of our family in every day of our lives. He has trouble at school, at home, at the grocery store, at the park, and the list goes on and on. Some days are better than others but it is always there. It's in the scuffle at school, the meltdown during a meeting, at the park when people stare, or when kids walk far enough around him so they won't be forced to interact with him.
This week, I have been reflecting on the milestones Ethan has hit in the four years since his diagnosis. He has overcome so much, by leaps and bounds, in such a short span of time. But as he ages, I forget that new problems will arise. Autism never goes away; it just brings new challenges in all shapes and sizes. And it makes me hurt for him. I can't imagine what must go on in his head most days. I honestly don't think I would want to know. How could I? I wouldn't want to know all of the struggles, fears, anxiety, frustrations, and emotions that affect him every second of the day. I wouldn't want to be in his head when he is having trouble finishing a task or answering a simple question. I wouldn't want to be in his head when he's treated badly by people that don't understand or care about him. He's so brave to be able to do all of those things. And he doesn't even know it.
Autism has taken a lot from him: Developmental skills, life skills, abilities, emotional and social skills. He has to learn things and even relearn things that he should have been able to learn with age. He works every day to keep up with his peers, teachers, classroom, and grade level expectations. All while simultaneously repeating words and phrases, stimming so much he can't focus, getting so frustrated he lashes out, dealing with people who don't understand him, getting anxious about what's next in the routine, and not having relationships with other kids his age. But yet, when I hear the "These are the things he needs to work on.." speech, it knocks the wind out of me. I forgot. I forgot that it is my job to help him stay on track; to give him the encouragement he needs to keep working, and the praise he needs to hear when he's doing a great job. Because autism never stops for him. Why should it stop for me?
The same woman posted another blog about being her son's "person." That even with a great relationship between her husband and son; her son always prefers her. She goes on to say that it can be physically and emotionally exhausting a lot of the time. It mostly certainly can be. But that's why God put me here; To be his person. To be his sisters' person, too. I'm their MOM. Who else should do it? I am so blessed and I try really hard not to take my family for granted. So I devote my life to him and his autism. Not because I have to. Because I am his mom. I should want to do that for my son. I'm his person.
My son is so compassionate. He's smart, sensitive, and sweet. He also has a temper on him that could make a grown man cry. But he's such a special person. I can't hate autism because autism makes him who he is; the good and the bad parts. I can get mad at autism, as I have been this past week. But I could never hate it. Without it, he wouldn't be the quirky little man I'm so proud to call my son. He's proud to tell people he has autism. Like when he introduced himself to a new kid in class, all he said was "I'm Ethan and I have autism!" Or when we wrote a note to his two best "bros" asking them for a playdate with my phone number at the bottom.
I wouldn't want to take away his beautiful blue eyes any more than I would want to take away his autism. It is part of who he is on the inside. Yes, autism is forever. And yes, autism is hard. But loving him? Loving him is the easy part. 

Extracurricular Activities

The struggle is so strong sometimes, it is unreal.
Luckily (if you can call it that), this is only the second time we have had to drop an extracurricular activity because my son, who has autism, sensory processing, and now ADHD, cannot cope with all that it takes to be in a small, active class, run by a teacher he is familiar with only on a 30mins per week basis, while several other classes and noises are happening all at the same time. I get it, son. I'm sorry I didn't see it before.
So Ethan has been participating in swim classes for almost a year now. He was learning a lot. But that seems to be about the time frame for which he can stand any one activity. He got off to a rocky start, his teacher was male (yes, for him that matters) and it didn't help that he was very unfamiliar with autism. After a couple weeks in the class, the teacher approached me about Ethan's unwillingness to participate and follow directions. I knew it was just him acting out because he wanted to be the boss. I explained Ethan to his teacher and how he just needed time to warm up to him and after another week or two, they seemed to come to a mutual understanding and they did really well for the next few months. 
Then Winter came. Here in Florida, we swim all year. So, while other children left swim classes for the season, Ethan stayed. He seemed to thrive in the smaller, quieter setting, and it helped that he had more one-on-one from his teacher. Then Spring came and I noticed more teachers and classes were growing. He started, little by little, to act out. Sometimes it was a refusal to do something, sometimes it was him purposely doing the opposite of what he was asked. My personal favorite, was him pretending to drown as a way of protest. Grrr...
As Summer is almost here, I see the crowded pool, the number of students and parents around the pool making all sorts of noise, and then there was the new teacher. It started with a sunburn from the past weekend. As, he got in the pool he complained of it burning. As he was "burning" he met his new teacher. As the new teacher asked him to participate he would complain of the "burning..." And so it went for 30 long minutes. I watched him cry, scream louder than most all the kids there, including the babies, say mean things, and splash water at the teacher all to avoid swimming in the pool. I had so many emotions through this ordeal, I honestly couldn't tell you which one to decide on. So I just sat there, speechless. I was angry at him for acting out. But I knew why he was doing it. I was sad for him, too. It was hard to watch. If he could just calm down. If he could just take a few deep breaths he could work through it. But not today. Sometimes he's a rockstar at working through his anxiety and uneasiness. Sometimes, he needs me to hold him and walk him through it. There's no balance. There's no in between. It's just a flip of a coin.
But I got those "stares." You know the ones I'm talking about. Neurotypical parents that look at me like my son is a monstrosity. How could your nearly 8 year old child be making such a fuss over swim class? I truly believe they were waiting for me to take him out of the pool and run away in shame.
Fat chance, Betty Homemaker.
I feel a lot of emotions where my son is concerned. If you have a special needs child, you most certainly understand where I'm coming from. I think it's one of the hardest parts of all of this. I couldn't tell if I wanted to be angry, frustrated, or to just cry it out.  All day, every day is a roller coaster of emotion that I can't get off of until he is sleeping soundly in his bed. Even then, there is usually a lot of dizziness afterward. Today's roller coaster had several twists and turns and I was ready to get off by dinnertime. The one emotion I never and will never feel about him is shame. He did not chose this life; this diagnosis or the feelings that come with it. If anything, the shame is on me. I saw his struggle start in Spring and I watched it progress. I often think This will be the one thing he overcomes all on his own!
Lies. Those are called lies.
I tell them to myself to make myself feel better. Yep, denial. I want that for him as most parents do for their children. I want him to be happy and have fun. I just forget there is a limit on the things that make him happy and I can't force it. But I did.
So there I was, watching him pitch the biggest of fits. While I did not approve of his ugliness to his teachers and classmates during said fits (for which there was consequences) I understood why he was having such a hard time. And I was partly to blame. I know my son better than anyone. I should have done something when I first realized he wasn't enjoying the class. I'll do better next time, my sweet boy.
He got out of the pool and we both took a break with a lot of deep breaths. After he got changed, he said "Mommy?" "Yeah, buddy?" He sighed heavily, "I don't think I want to do swim class anymore." "I know, bud." He gave me a surprised look, "You do?" "Yes. But thank you for telling me with your words." Ethan smiled. "You're welcome."
I think as painful as this whole ordeal was and the blame I feel for letting it get to this point, I also think it was a lesson to me, as Ethan's mom, to always go with my gut. If I have to question myself about the answer, than I'm pretty sure I already know what the answer is.
And thus ends our chapter on Swim Lessons. At least for now. The boy loves water. It is one of his favorite things. I don't think he can stay away for too long. 
This just means we are on to our next adventure. For however long that lasts. :)

Parenting Fail

I thought I had a handle on this parenting thing. As a special needs parent, ironically I find it much harder to parent my neurotypical child, believe it or not. I thought my daughter and I were doing well. I try to give her the attention that she so desperately needs because the focus is often times on her brother who has autism. I try to be friendly, loving, caring, and as much as I can, silly, too. But no matter what I do, I seem to always "do it wrong" with her. I get an attitude from her about anything and everything which usually, though not always, ends in her emotional breakdown. It seems tonight was her breaking point. She said the words a mom hopes she never has to hear: 

"I wish you weren't my mommy."

So many things flowed through my head at that moment. Do other moms go through this? What should I do? What should I say? What does this say about me as a mom? What does this say about the relationship with my daughter? And even as I talked myself through not reacting I could feel the tears behind my eyes. Mostly though, because I was sad for her. She got so upset that she lost control. She felt like this was the only way to express herself. Shame on me.
Now to be fair to her, she had a long day made longer by her late gymnastics class. She was hungry, she was tired, she was just ready to be done. The whole situation itself, I feel like I handled well but the way that it ended, basically her not getting her way, ended very, very badly. I'm not sharing this so that anyone thinks little of her, berates her for her behavior, or says I'm a terrible mother. I share this so people will know that while kids don't always get it right, neither do parents. We are all still learning. In fact, I just learned that tonight.
My daughter is one of the most compassionate, sweet, loving, and caring six year olds I know. She is already smarter than I will ever be. She's mature beyond many years. And she has always been so very independent that I sometimes forget she's only six. I know that what she said, though hurtful and purposefully unkind, was said in anger. And the kind of person she is means she will beat herself up for upsetting me. She will be sad and disappointed in herself for what she said without me having to say a word. She knows right from wrong. But we all make mistakes. We learn and we move on. We all have consequences in order to remind us about what we learned. We do better next time. 

I share this because I think maybe, just maybe I needed a reminder that when we don't always get it right. It just means we need to work harder as a family to get through things like this together. I believe it will make us stronger. This whole incident taught me that there's never a lull in parenting. I think this had to happen because what I thought was a stable relationship with my little girl was really slowly struggling. I think I needed a wake-up call to be able to see that. I'm glad I did, before it was too late. Now she and I, along with my family, have some work to do.

I love you, Mama. We'll fix this. XoXo

Milestone Accomplished

I feel like I must prepare you for all the bragging that is about to happen. Just let me just say, he has earned it. Last night was a milestone of epic proportions for my little guy and he absolutely deserves to share it with the world.

When Ethan was in Kindergarten a couple of years ago, they put on a play that involved all the kids singing and talking into a microphone. Ethan was hysterically crying, no that word doesn't describe it properly. I would say he was sobbing more than anything. The. Entire. Time. 

Okay, I take that back. At the very end, when it was his turn to say his name into the microphone, that went really well, he enjoyed that part. But the singing, people all around him, everyone moving from one point to the other was awful for him. Now, he had just transitioned to a new school, new teachers, classroom and friends, and those were all on the tails of a brand new diagnosis. So, to say things were hard for him at that time would be an understatement.

He had gotten so upset during the performance that his teacher gave him a stuffed animal from his classroom to hold. Still, he continued to cry uncontrollably. Little tears streamed down his face, one right after the other. As his mom, it was hard to watch but I was able to witness the loving exchange that happened between him and his ESE teacher. She saw his struggle and went over to him and rubbed his back and talked to him with calm, kind words. She stayed with him the rest of the time. She never got upset, yelled or put him off on someone else. She is one of my all time heroes. 

He even calmed down a bit after sitting with her. I will never forget the kindness she showed him that night. But I will also never forget what it felt like to watch your son struggle with something that is beyond his control. It is heartbreaking.

What is worse is that he was upset for getting upset and he was worried what his family and friends thought about him. I'm proud of him for sticking it out through the whole performance but I have since been weary of him doing anything in front of anyone, ever. I just don't want him to have to go through that again.

Fast forward 2 years, he is now in 2nd grade. His is doing great and making lots of progress but as soon as I found out about the class' winter program, I immediately had flashbacks of kindergarten. Will they ask him not to come? Will he ask not to go? Will someone be with him just in case? I talked to his teacher at our next meeting. I told her my concerns, a little bit about what had happened previously, and that I honestly didn't know if I wanted him to come at all since he had been telling me "I am not going!" She then informed me that she would be out of town the night of the performance, his usual aide wouldn't be there, and he was more or less on his own this time. So my anxiety about this whole shindig skyrocketed by 1000%!

She told me later that she had talked to some of the other teachers and they came up with a plan about how to make him feel comfortable. First, there would be someone with him. Then, they gave him a folder with the words to every song so he could follow along. She said he was doing really well with that and he would be allowed to have it during the performance. Phew! (I love his school!)

Following Along

So during the night of the performance I am a nervous wreck. I'm saying prayers on the way there and I am taking deep breaths so as not to freak him out. As soon as we get there it's time for him to line up with this class. So there he goes. Without me. Who is going to help him? What if he needs me? What if he starts freaking out?

If it's one thing this kid can always do, it's surprise me. He walked right into his place with the other kids. He didn't shed one tear. He never whined, cried, yelled or pitched a fit. In fact, at one point, he was about to start stimming and stopped himself. He has never, NEVER done that before, especially not on his own. People were laughing, singing along, clapping; all the things that I thought would set him off and he steeled himself against it all. I couldn't believe it! I watched in awe as I looked at his face and his slight head tilt and actually saw himself working through the uncomfortableness. As if that wasn't awesome enough, we caught him even attempting to sing along a few times, too! Un-be-lieve-able! I was so proud of him. More proud than words could ever express. So I just cried. 
You are probably thinking "Big deal" or "My kid loves to sing and dance." I know, my daughter does, too. But my son; my son never wants to be the center of attention. This was HUGE for him.
I sent a silent thank you to God for being with ME since I clearly needed it more than Ethan. I will never forget that handsome face smiling and the little hand waving to me as I took  pictures of this epic milestone. Some friends, teachers, and even the principal caught a few pictures of him during the performance because they too, were so amazed at his transformation. None of us could believe how much he has grown and matured. He did it!

And so we have been shouting it from the rooftops. You nailed it bud, and all on your own. I can't wait to see what you amaze me with next!

Homemade

Having 3 hours of sleep is never a good start to the day. With things like not finishing your coffee or having to work 8 non stop hours you start to see signs you didn't get enough sleep..
For instance, you unknowingly switch your 1 yrs old's lunch with your 2yr old's. My 1 yrs old's teacher said she "didn't want to eat her chicken." Me: "Um, I didn't pack her any chicken." So she showed it to me and said "She looked at the chicken, then looked at me and rolled her eyes."
Walking up and down the aisles of the grocery store with 2 small children trying with all your might to think of the 3 things you came in the there for. After leaving the store with umpteen things and $20 some-odd dollars later and you still aren't sure if you got the things you came in there for.
Then you get home to pay bills and you're so wrapped up in paying the bills you didn't realize that almost an hour and 15mins has gone by. It's now dinnertime and you were supposed to have all the dinner prep done 45mins ago. So now, you proceed with your game plan of Homemade fried chicken, Homemade mashed potatoes, peas and Homemade chocolate chip cookies. Another hour and change later, you finally get to sit down to eat.
You make what you thought was a double batch of cookie dough only to have it melt in the oven, spilling over the pan and burning onto the element to make the entire house smell like it was burning to the ground. Side note-you must double EVERYTHING in your recipe; including the flour when making a double batch. Duly noted.
After all of it, the chicken turned out amazing, the mashed potatoes were especially creamy and those cookies (after you add the proper amount of flour) came out so yummy. We made memories. The first time I made cookies for my kids, the first time they tasted cookie dough (and lived to tell about it!)...
Those memories...those are Homemade.

10/3/11

A Letter to Neuro-Typicals Who Don't Get It

Dear Neuro-Typical Adults,
Imagine if you will, 2 children. Child A is a boy, say around 7 years old. Child B is girl about 6 years of age. They have a lot of similarities. Both of them have sparkling blue eyes and blonde hair. Both can read, write, play, love, laugh, and cry. They both have fun and play, they both sometimes need time to themselves. What differences can you find just by looking at them?
I assume you would say something like, "One is a boy, the other is a girl. One is taller or heavier. One is wearing black while the other is wearing green." Perhaps maybe you noticed that one might be older than the other. Those things are all true. But look at them, really look.

Can you tell me which one has Autism?

Can you tell me which one has trouble regulating their own body? Would you be able to tell me which one has fine motor delay? I bet you can't figure out which one has sensitivity to loud noises & touching or which of them has trouble sitting still? Which of them is shy and doesn't do well with strangers or strange places? Who has trouble falling asleep because they're pacing across the room for 2-2 1/2 hours each night? 

Were you able to figure out which one of them has Autism just by looking at them?

While they both look similar, it does not mean they are the same. So just stop; stop trying to make special needs children "act normal." They are different but not less. They are already trying; hard, to fit in and do not need you correcting their every move. Don't yell at the them. Don't embarrass them. Don't make them feel any different than they already do. Let them be kids. Let them regulate themselves the way they know how. Let them be the special people they were meant to be. Stop trying to change them. There is nothing to change. All you are doing is frustrating them, yourselves, and most importantly their mom. 

And if you have the unfortunate luck of saying something condescending to my child while I am standing there, well, don't say I didn't warn you.

Oh, and if you are still wandering which one of these beautiful children have Autism; it doesn't really matter. They are perfect just the way they are.

Signed,

One Angry Autism Mom

Worry Free

In church this morning, the Pastor spoke about drowning our demons. He retold the story of the demon possessed man (Mark 5:1-20) and how Jesus simply told the demons to come out of the man. The demons asked that they remain by requesting to possess a herd of pigs. After they went into the pigs, the pigs rushed down a steep bank and into a lake where they drowned. Although these demons gave the name Legion, the Pastor reminded us that "demons" have different names. He asked us to identify what demons hold us back or control aspects of our lives and give it to God. He placed buckets in the middle of the aisles and encouraged us to take up a stone, symbolic of our demon and place it into the water where we would be washed of it. It was finally time to confront my demon. My demon is worry. I may put up a good front, but I am in a perpetual state of worry. I worry about my kids, their school work, my husband, selling our house, our jobs, my car, family members, what may or may not happen on a play-date or a group function. You name it and I can show you how to worry about it. Worry causes anxiety and stress and yet I continue to hold on to it, as if letting it go and losing control of it would somehow make things worse. And even as I tell myself I'm giving my worry to God, I think I am not-so-secretly just helping HIM worry about it, too.

As I listened to the pastor explain the sermon, I was already sick with worry. Today was the first day at church that my son who has Autism and sensory processing disorder, among other things, requested to go to Sunday School all by himself. I must sound ridiculous! But to our family, this was huge and an even bigger step in his journey. So I sat in church and listened to the Pastor preach about letting go of your demons as I shook my leg and nervously sipped my coffee. It was then that I got the message. As if God sent it directly to me, I watched a mother, of whom I can only assume was her adult child with some form of Autism or similar special need, caress, hug, talk softly and gently kiss her son. She did all of it with a happy, delighted smile on her face. I keep wondering why she spent so much attention on him as he seemed to be well behaved and in control. As a fellow special needs mom though, I knew she must have had her reasons. Those reasons became clear when, during the portion of the sermon when we were invited to drop the stones into the bucket, the boy and his mother went together...and the young man wouldn't leave. He was very happy to continue dropping stones into the water, walking back and forth, even laughing and clapping at one point and doing it all over again. My heart just smiled. Not just for the young man who was clearly having fun but for the mother, without an ounce of worry on her face, laughed right along with him. She explained to him that he could do it a few more times but then he would have to sit back down. When he didn't immediately respond, I thought Oh, no! What is she going to do if he doesn't listen? But she just laughed and then explained it to him again. She never once looked to see who was staring. She never looked at the Pastor to see if they were causing a disruption. In fact, she leaned over, said something to her husband and they both laughed all while the boy threw another stone into the water and laughed as he rocked back and forth. I could hardly hold back the tears. Not just because it was a beautiful moment to watch but because I was wondering how this woman got to be so carefree.

Shortly after that, the boy went willingly back to his seat, we all said a quick prayer and then it was time for communion. Unabashedly, I continued watching this family as they lined up, directed their son in the correct way to receive communion and then exit the line. I didn't see what happened but it became apparent that he did not do something as expected because there was a small giggle from the group around them and then the family quickly exited the line...all while laughing, the boy included! I was stunned. How can she not be worried about what people will say about her son or her parenting skills? And then it hit me like a ton of bricks... It's not for her to worry about... And look how happy she is because of it! I felt a kinship with this unknown woman. I know she was anticipating something happening with her son as she kept him calm during the service but she didn't worry about it. I also know as a special needs mom, she was ready for anything but she didn't let that stop her from enjoying time with her son or her time at church as we did for so many years. I aspire to be like her.

So I took my communion and made a conscious decision to let go off all my worries; big, small, personal, or professional. I dropped my stone in the bucket and released my demon.
Soon after that church was over and it was time to pick up the kiddos from Sunday School. I made it a point to let my husband go pick up our son and I went to get our daughter from her class. We met back in the hallway. My son was all smiles. I asked, "Did you have a good time today at church?" He said, "You bet." See, nothing to worry about.
That was one small step for me today, too.😏

Making A Friend

I think a lot of us take for granted how easily we can connect with someone. Personally, I'm somewhere in the middle. I can make friends easily but I have to feel some sort of connection there first, otherwise, I don't feel the need to put energy into a relationship that will most likely go nowhere. My son, who has autism and lacks heavily in social skills, doesn't have the luxury. Ethan is a sweet boy who loves everyone. But even if he knows you that does not mean he can play side by side with you. It is a skill he has been learning to develop. Today we had a breakthrough.
While at the park this afternoon, Ethan, who usually plays by himself, was doing just that on the playground inside one of those tiny houses opening and closing the door repeatedly. This little boy came up to him a few minutes later and just stared. He was younger than Ethan but I just assumed he would be like all the other kids and ask me why he kept closing the door or ask why he kept rubbing his legs and jumping. While I was pondering what to say to this boy, and to my utter surprise, the boy started laughing. A happy giggle of pure joy. And to my greater surprise, Ethan laughed with him. That was all it took. Ethan then invited the little boy into his playhouse to open and close the door himself. After many giggles they raced to the see-saw and began to bounce up and down. Ethan the heavier of the two boys, bounced the boy hard enough to bump off his seat for a second and the boy laughed some more. The more he laughed, the more Ethan laughed. So I watched; amazed. This finally happened. One great big step for Ethan and this little boy was such a big part of it. Suddenly, Ethan toppled off the see-saw and began to scream and cry. To my great disappoint, I assumed this new friend would turn away from the screaming and wander off to play with someone else. So in mommy swooped to the rescue. He picked himself up off the ground we talked through it for a minute. To my great astonishment, he ran back to the little boy who was patiently waiting to start playing again. I just stood there, unsure what to do. This has never happened before. I followed them just to be sure he was ok. But there they were, chasing each other up the stairs of the castle finally reaching the top in peels of laughter. This went on for an entire hour. Ethan has never done anything for an hour let alone play with someone he just met. Two more times Ethan got upset but held himself together, asked me for a hug and off he went. Through all of this, that little boy waited patiently for Ethan to calm down and continue playing. This little boy, who I later found out was just 4 years old, never once asked why Ethan cried so much, why he jumped around, or why he rubs his legs all the time. I never want people to feel like they can't ask us questions; I encourage it even. But words cannot express what it feels like for someone to simply accept Ethan the way God made him; no questions asked.
When it finally came time to part ways and believe me, it took all I had to separate the two of them, I heard the boys father calling him and the boy began to cry. Ethan, too, seemed upset and I asked him if he would like to go say goodbye to his new friend. We made our way over to them and I heard the little boy tell his dad that he didn't want to leave his new friend; he really, really liked him. I reminded Ethan to thank the boy and his father for playing with us today. The little boy said he forgot to give Ethan a hug and a kiss took off after him (since Ethan started jumping away). I couldn't stop myself from expressing my appreciation of such a loving family. I told the dad his son truly was a special boy if he could be so sweet to someone he just met. I let him know Ethan had special needs and not many kids play with him because they find it hard to interact with him. They don't try to be mean or anything but they just can't connect with him the same way his son did. They usually give up and go find someone else to play with. But his son didn't. I let him know how much that meant to Ethan and also to me. He might think I'm crazy and I'm ok with that. I told that kid how awesome he was and that we hope we get to see him again soon. Then we all finally parted ways. Whether he knows it or not, that boy was a huge milestone in Ethan's life. The little 4 year old has more compassion in his little finger than most adults have in their whole bodies. These kind, loving boys will turn into exceptional young men.

Go Get 'Em!

As a parent, especially one that is around their children 90% of the time (I am NOT exaggerating), we often wish for alone time or at the very least, some quiet time. Today I finally got it and let me tell you, it is not all its cracked up to be. It's lonely and it's sad. It's too quiet. The lesson I learned today was that all the noise I'm used to hearing, means something. It means I am a mom. It means my children are healthy, maybe not always happy, but it means they are playing together, having fun. Just knowing they are home makes it an entirely different noise.
As I walked into the house with no noise in tow, even the dog cocked his head at me as if to say "Where'd they go?" The silence I hear right now is, quite literally, deafening. No little feet pitter-pattering down the hall, nothing is banging on the walls, no TVs are blaring. Nothing. I can hear the noise from the keys on the keyboard echoing in the house. It is like I've said before, no one tells you about these things until it happens. Then you play the "I Wish" game. "I wish I had played that one extra game," "I wish I had stayed at the park that extra half hour." No one told me how final life feels when your kids aren't around. Never will there be any babies in preschool, no diapers to change, no babies to feed or put clothes on. They are all but grown up.
As I'm sure you can tell, today was a roller coaster of emotions for me, much like the last few weeks prior to this bittersweet occasion. Today, my sweet "baby" girl turned five and I sent her off into the world...Ok, it was kindergarten. But in my defense it may as well have been the world.
This kid has been ready for kindergarten for years. She looked forward to the transition; the change in people, surroundings, learning..she couldn't be more ready! But I wasn't. I wasn't ready for my baby to be five. I wasn't ready for my little girl to be away from me. But she was. I still don't think it has sunk in all the way for me yet.
A few days ago, we met her new teacher. We learned about some of the things she was going to be doing in kindergarten this year (homework for one, yes, homework in kindergarten!). I was in awe at the look of wonder on her face; her rapt attention as the teacher explained projects, subjects, and art, I could see the wheels turning in her head as she was already planning what she was going to do. She was excited, thrilled even, for homework! She has waited so long to be "grown up." Her time has finally come.
But its not really her I'm worried about. What worries me is the sad, twisted world we live in. I can no longer keep her in the cocoon I've made around her. I cannot be the barrier between her and the things in this world. She will start to see and hear things more and more and inevitably listen to me, the voice in her head, less and less. How can I protect her? How do I keep her faith strong while I'm not watching? This world is a scary and dangerous place. I'm terrified that it will swallow up my baby, her beliefs, her conscience. What I need to remember, what I need to focus on, is that I am helping to mold a strong, independent girl. She will, in turn, become a strong, independent woman. And that, world, is what YOU should be afraid of. Instead of fearing for her, I will continue to build her up, shape her into what she will mean to this world. I need to stop worrying what the world will do to change her and instead, focus on what she will do to change this world. I know she can do it if she wants to.
So, today I sent her off into the world. As soon as she got there she was itching to start her day. She gave me a kiss, waved goodbye and I drove to work in a puddle of tears. But I wouldn't change a thing. She's going to do great things. Today kindergarten, tomorrow the bus! Who knows what will come after that! You can bet no matter what, her mama will be there somewhere, probably crying her eyes out, but cheering her on louder than anyone. Happy Birthday sweet girl, Go Get 'Em!! Mama loves you more and most!  XOXO

This May Come As a Surprise...

But being a mom is hard!

Well, to be fair, it's really not even that specific. Being a parent, in general, is hard work. I am a mom with many jobs; working mom, stay at home mom, chauffeur, chaperon, baker, dance mom, gym mom, maid...the list goes on.

I don't know about the rest of you, but I am exhausted!

It doesn't have to be physically tiring. More often than not, it is more of a mental exhaustion.

I was having coffee with a girlfriend the other afternoon while our kids (four of them between us) played in the other room together. Between our own sips of delicious-but-quickly-turning-cold coffee, we heard laughing, tears, screaming, and running from room to room. Among the chaos, she and I shared stories and anecdotes of our journey through motherhood.

Every couple of sentences we would stop to put out a fire (not literally, thank goodness!), grab a snack/juice, or kiss a boo boo. We shared stories of pregnancy, married life, and those "crazy kids" stories like fights over invisible pictures, when my daughter thought she was Crouching Tiger, Hidden Dragon in the middle of a store, and the trials of being a parent to a kid with a particular set of needs.

A few days before that, my family and I had breakfast with my sister and my 2 year old nephew; a very active 2-year-old who was not the least bit interested in sitting still and quiet while waiting for his food. At one point, he screamed to get out of his highchair and once on the ground proceeded to hightail it all over the restaurant and at one point even ending up in the kitchen!

My poor sister. So frazzled. Embarrassed maybe? But she turned to me for help and I did the only thing I thought would solve the problem. I used my phone to turn on Netflix and he watched a whole episode of something while we ate our food. He was still, quiet, and if I may say so, quite content.

About 10 minutes into our meal, my sister looked so distraught. I asked if there was anything wrong and she said something to the effect of, "I always said I wasn't going to let my kid watch T.V. at the table.." She looked so disappointed in herself. The only advice I could give was, "We all say that." And its true; we do! 

It is something I struggle with constantly. I literally stress my brain out wondering if the decisions I make today, right now at this moment, will mess up my kids for the rest of their lives. And it is EXHAUSTING!

My girlfriend expressed some concerns to me about how her children snack throughout the day instead of having just 3 balanced meals a day. My sister asks why her son does this or that. What should she do? How should she do it? 
While I may not stress about those particular things, there is always something else. And its not just us. I know all moms, parents, have these feelings of inadequacy.

I am constantly second-guessing myself. Having a kid with special needs; yep, I'm bound to mess that up. He has to read for 30mins everyday as his homework but he's sprawled out on the floor like a starfish screaming at me. Do I make him do it anyway? Do I skip it right now and try again later? Do I give up tonight and try tomorrow instead?

He's been on the computer for an hour but they say "no more than 30 minutes a day"...Hmmm...But he's so content. Should I cut him off? Should I compromise, bribe, or beg?
Then there's my strong-willed, probably-already-smarter-than-me kid. She just sassed a complete stranger! I am so embarrassed...I should correct her. But then she'll yell at me! She was rude, she should apologize. But I want her to speak her mind and stand up for herself. Did she really just roll her eyes at me? Did she just try to kung-fu kick me (no, she doesn't even take karate classes!) ..in a store? She wants to know why people go hungry and why people die. Should I explain it to her? Will she carry that burden through childhood? UGH! Why is this so hard?!

My kids wake up earlier on the weekends than they do at any point during the week. We let our kids watch T.V. until we are ready to get up, too. Sometimes that can be an hour and a half of Disney Channel! I always reprimand myself for being such a horrible mother. I should get up with them! But it's so early! The paper isn't even in the driveway yet. And the sun-Ack! The sun won't be up for another hour or so. And yet I can never seem to do it. And each weekend I feel like a failure.

With all of these situations happening, I am especially grateful for my faith. Without something there for me to lean on and believe in, I would never have made it this far as a parent. I pray for my kids daily. I pray mostly that I am not screwing them up but on those rare occasions when I do get it right, that it stays in their minds as well as their hearts. I pray they learn from it and are able to look back on it as a guide in their lives.

I use that phrase "We learn something new every day" a lot. Its so true. No matter how big or small. We learn a something about our children, ourselves, our marriage. And when tomorrow comes we can start fresh and try again.

The kids watched 2 hours of T.V. today. Oh no! How about tomorrow we will read instead? They had a cookie at snack time. Say it isn't so! Maybe tomorrow we should have some fruit for snack. We can't get it perfect every time. But we learn and grow. We are in this together. We will never be able to enjoy this journey if we are worrying all the time.

Those trials, our feelings, these are little things I like to call Lessons. Everything is a lesson. A teachable moment not just for the little ones but for us parents, as well. We don't have all the answers, though I will never admit that to them. But we must learn from our praises and our mistakes. We aren't going to get all of the answers right and certainly not on the first try. And what worked for you today may not work again. What works for your friend's children may not work for yours. But we do our best. That's all our children really need. 

Truth About Love

My son Ethan, 5, has been diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder. Immediately upon hearing this people want to offer their condolences for having a child with special needs. For a long time this angered me about people but then I realized that those people must not know what amazing children these kids are. They are so much more than their diagnosis. I feel like there should be more stories about the successes that come out of these 'conditions.'
Ethan's "condition" allows him to see and feel things that a lot of people, even grown ups, cannot. Ethan is very empathetic, kind and generous. He is able to see inside a person for who they really are. It is a trait I wouldn't give up for anything!
A perfect example of this had me completely choked up the other morning while waiting for his bus. Ethan was telling us about Michael. My husband and I were curious and wanted to know more about this Michael. So we asked Ethan:
"Who is Michael?"
"He is my friend," replied Ethan.
"Does he ride your bus?" I asked.
"No," said Ethan.
"Is he in your class?" Asked my husband.
"No," he said.
I finally asked, "Well, how do you know Michael?"
"He is in P.E. with me," he explained.
"Oh," said I. "He is in another class then?"
"Yes. He has a chair with wheels on it." He quickly told us happily.
Upon hearing this, I momentarily panicked at how I was going to explain to him about what it means for this boy to have a wheelchair and how to act {socially} because of it, when I was suddenly interrupted by him excitedly exclaiming, "And I get to push him!"
My eyes completely filled with tears and I smiled really big at him and asked, "Do you love pushing Michael in his chair?"
"Yes!" He said excitedly and giggled to himself.
And here I was, worried about him being politically correct when he hadn't even noticed there was anything to be correct about. All he sees is a friend who he gets to 'play' with...and he loves it! I could not be more proud of him for not only forming a relationship in the first place but for also setting an example for all of us to follow. That's MY boy. And I would not change a thing. :)

The Things No One Tells You About (Motherhood)

I was listening to a song not too long ago about someone's daughter and how she grows up too quickly. And it's true. But no one ever told me that would happen. This nostalgia has been weighing on my mind and heart a lot these past few months.

When I was pregnant with my first child, no one ever told me to enjoy having a miracle grow inside my belly. They only wanted to talk about all the complaints I had about being pregnant. When I was pregnant again shortly after the first, I didn't even have time to enjoy it if I wanted to. All I wanted to do was be able to bend over to pick up my very active toddler. No one told me that I might never be pregnant again. No one told me to be thankful for that little miracle and the bond we shared for nine months.

I have been focused a lot with my eldest child as he has special needs. And while I don't neglect my second-born, I know she doesn't need me nearly as much. She has just turned 4 and might as well be going on 18! It breaks my heart. I feel as if, on some level, my son will always need me in some capacity. But my daughter, well, she'd just rather do it herself. I love that about her. It also leaves me watching mostly from the sidelines. I wish I could go back in time and take a picture of all the memories I hurried to get through, since no one told me I would one day regret moving so fast to get there.

I remember waiting for her to talk then at five months she surprises us with "mama." No one told me I would miss her babbling and blowing spit bubbles. I remember wondering if she would ever stop nursing only to have her wake up one day at 11months and shake her head at me when I offered my milk. I know no one told me that I would miss diaper changes. But after she potty trained herself around 18months, the games we played on the changing table stopped, too. No one told me not to wish for her to finally start walking because that would mean I would have no reason to cradle her in my arms. No one told me I would miss those sweet moments.

And so I created this incredibly independent, spirited, and astoundingly intelligent young lady. I couldn't be prouder of her. But in doing so, I also hit fast forward past all the moments that make having a baby so precious.

I now have a pre-pre teen. She dresses herself, does her own hair. She tells me what kind of toys she wants me to buy, she plans her own menu for lunch, and she even back-seat drives while in the car with me. ("Mommy, yellow means slow down," "Mommy, you're going too fast," "This isn't the way to our house. Are you going the right way,") She doesn't want play dates with me she wants play dates with her friends. In fact, this weekend she taught herself how to swing. No one told me I would miss that.

While I regret all that I let slip away so quickly, I am grateful for the little girl she has become. She is respectful but can speak her mind. She won't let anyone walk all over her or her brother. She is such a loving and compassionate person. She knows what she wants and how to get it. She's only 4! Imagine what she will be like as an adult. She will make a wonderful mother but she will also be a smart businesswoman. It makes me sad that my baby isn't so much a baby anymore. And it makes me sad that she has the personality of, well, me; sarcasm included! But she is a good girl. She is kind and sweet and generous and she impresses me everyday. And she is all mine. I am so lucky!

And if all I get to do is watch from the sidelines then so be it. That will give me more time to brag about MY baby girl.

 

My Sweet Petunia

Kindergarten

I'm one of "those moms." I take 4,000 pictures of my kids whether there is an accomplishment involved or not (although, there is even more pictures if there is). Kindergarten, to me, is one of those accomplishments. It is a right of passage one takes in order to be considered a kid instead of a toddler. But be warned though; you can never go back.

 

I remember my first day of kindergarten. I had never been in school and I could not fathom why my mother would send me away for 6 hours a day (while juggling a work-from-home-job, other siblings and chores; don't worry mom, I get it now!) I remember being scared, kind of excited but mostly just counting down the time until I could go home. As an adult, I realize now why I went but most importantly, what my mother must have been going through on that dreadful first day.

Then I multiplied that feeling by, oh, say, 5 million and that's what I went through today as my first born walked into his kindergarten class.

I feel that as a mother of a child who has special needs, all my emotions are felt tenfold. With the kindergarten meeting not going well a few months ago, the anxiety I felt was warranted.

 

Would he cry?

Would he be upset after I leave?

Would he get the love and attention he needs?

Would he lash out at the teacher or his friends?

Will he not understand what is going on and wonder where I am all day?

 

Among the normal feelings during this transition, I felt guilt. This is the part about being a mother that nobody tells you about. He's been in preschool with me his whole life. I've never been more than a few doors down. If he needed me, I came running. Even a few months ago we switched pre-k from my school to his current school but that didn't bother me.

 

Today, the lesson I learned was why you never hear people tell stories of those bad memories. It's because everything works out in the end. So that all you're left with is the memories of how well it all turned out.

Ready for his first day of school

My son has anxiety when it comes to people and places he is not familiar with. There was a TON of people at the school during drop off time which usually only agitates him more. But he took it like a champ! He walked into his class, sat down at his desk and got to work. I was so proud of him that the word 'proud' doesn't even do justice to what I was feeling. It was an answered prayer (yes, literally!). The best part, the part that will stay with me forever was when I told him it was time for mommy and daddy to leave, he smiled real big at me and said, "Bye, mommy!"

My big boy.
That was the moment I lost all hope of keeping it together. My eyes instantly filled with tears. I would never forgive myself if I hindered his already amazing progress with my emotional outburst so I immediately hugged and kissed him like he was going off to war and fled the room like it was on fire.
My baby was in kindergarten.

We get out the door and I just let it all out. My husband asks me if I'm ok (as I'm pretty sure I am scaring him). And I shouted "NO!"

I wasn't OK. But my son is.

That's all that matters. I will gladly worry about him so that he won't have to.

Which is precisely what I did all day.

 

As I waited for him to get off the bus, that small moment of panic popped up again.

 

What if he had a horrible day?

What if he hates it there?

What if he's being crying all day for me?

What if...

...What if he had a great day and I didn't need to worry?

 

So, what if I'm that mom? Big deal that I take a thousand pictures of one single event. I will forever have those memories. I will forever be able to look back on all that my son has accomplished. I will be able to share those special moments...

 

because everything worked out in the end :)

 

Me and my kindergartener

 

Oh, The Places He'll Go

Not long after my son, Ethan, was diagnosed with Autism Spectrum Disorder, we started hearing a lot about the struggles he would have growing up. There was even a doctor (I use that term loosely) who told me that Ethan's behaviors were so bad, he would struggle through Kindergarten, if he would make it through at all.

Quickly following news of all his limitations we noticed that people; fellow parents, children, people without children (my personal favorite), became quick to judge. They each look at him differently. Expressions range from pity to curiosity to dislike. People look at us as parents and judge us, too. They don't take the time to look at the struggle we are persevering through as a family.

 

This morning the director at Ethan's preschool pulled me aside and asked me why my son was attending his preschool graduation. Normally, he goes to public school in the ESE program during the morning then goes to the preschool in the afternoons. But he has attended this preschool since birth and I felt like he and I have earned this special right of passage and therefore should be in attendance. She said that he doesn't really go to school here so she assumed he wasn't coming. (And I think we all know what happens when we assume..) I told her that he was a student enrolled in the preschool like everyone else and I assumed he would attend. She told me I should have asked her first. I said no and again explained that he was enrolled at the school like everyone else and should get to attend. What she failed to realize, what I can see very clearly, is that she somehow made this about her and it's not. It's about Ethan. It is about how far he has come in the last few years. From screaming and crying while throwing fits on the floor to using his words and reaching those goals that people assumed he wouldn't reach. His hard work, nearly 14 months of Occupational Therapy to get him ready for Kindergarten, and now he finally has something to show for it. And she tried to take that away from him all because she is embarrassed by his behavior. The fidgeting, pacing, teeth grinding, talking out of turn doesn't fit into her perfect little world. I feel sorry for her. All those things are part of what makes Ethan the wonderful, caring and fun little boy that he was made to be and she's missing it. People are missing opportunities to get to know someone so wonderful simply because they don't understand him. It is truly saddening that there are people in this world that will never privilege themselves with a chance to know a kid like Ethan. 

 

Then while Ethan attended his Kindergarten Orientation, I watched the uneasiness settle in and felt the worry creep into my bones. When they called all the students to go to the classrooms with the teachers, the anxiety started, as it usually does. With tears shimmering in his worried, blue eyes he whispered a simple plea, "Mommy, come with me" and it broke my heart in two. Ethan was the only kid in the group who was crying.
I watched him cry as he was asked to walk away from us and go with someone he has never seen before to a place he has never been. It was then that I noticed people staring, judging. I sat worrying what this new chapter in his life will bring. Will he regress? Will he hate me for making him do this? (I felt my own tears forming in my eyes..) Can he do this? Will he make it without me? (I felt my throat start to burn with unshed tears..) 
 

A half hour later, we went to pick Ethan up from his Kindergarten class. He was sitting in a group, still upset but relatively quiet, not screaming or throwing a fit with a Special Ed teacher sitting close by talking him down when he got anxious. No, he wasn't adjusted like the other kids but he was adjusting. At his own pace, sure, but he was doing it. And I couldn't have been prouder! It was then that I realized that my son is "Special Needs." Ever since his diagnosis, I have struggled with him fitting in like a typical child. But that's not who he is. And today I realized that I don't want him to be like that either. He needs an extra hug, or an extra moment to calm down. He needs help staying focused and he's going to need help until he can help himself. And it's OK that he has those 'special needs.' It is people like the Special Ed lady who helped him today, help moms like me realize that yes, he is always going to be a little different but never, NEVER less than anyone else. And no one can make him or us feel that way unless we let them. He can do this! He will make it through this like all the other challenges before. He will never cease to amaze me.

As a parent to a child with special needs, you can't help but worry. For me, I know Ethan's potential, his strengths and weaknesses, what he needs help with, what he pretends to need help with. But most importantly, I know what he is capable of and as much as I do worry, I know he will persevere. He is so strong and courageous; a true fighter. What this lesson has taught me is to let him be brave and fight his own battles. He can do or be anything he wants. But through it all, I will make sure he knows that mommy will always be right beside him, ready to fight, laugh or cry right along with him.

No matter what.

My Little Graduate