Grow Through It.

Self-injurious behavior.

This hand of “SIB” that has been dealt is not for the faint of heart.

Most days it can bring the strongest to their knees.

Watching your child who has a heart of gold & whose giggles could burst your heart, hurt their self is the lowest point of numb.

How can I help my baby?

Why are they doing this?

I ask these questions every single day.

I feel completely numb as if I’m not in my own body while my son is thrashing his sweet body around our floor.

When he bangs his head off our walls and scratches himself until he bleeds, I do everything I can to protect him but I can only do so much. And I sit there, helpless and numb.

Numb, that’s the emotion, the feeling and the way we live. I don’t cry anymore, I just don’t feel anything as if I’m not human while he’s doing it.

His super human strength tears away from me every time and I can’t stop him. He gets away and it’s all I can do to hold my hands by his head as he drops to the ground and fights with every muscle he has to protect his head.

His body that I created inside mine, he is fighting and hurting. He’s bruising it, he’s scratching it and he’s trying to rid his body of the misery inside. It literally kills me inside to know how he must feel on the inside if he acts this way on the outside.

With therapies, medications and love we will grow through this. We have to. It’s all we can do. We wake up everyday and start all over just like everyone else.

We will grow through this my son.

It’s Okay to not be Okay.

It’s okay, to not be okay.

I want you to close your eyes after reading this sentence and sit and ponder on it for a moment.

What if your child you dreamed of in your belly came out, learned everything that they should and then one day stopped and went back to a baby cognitively?

Now really close your eyes and think about it. It could be your infant, 5 year old, 16 year old or even your grandchild. Just imagine it.

This is called regression.

Now, stay with me.

One day I woke up and my beautiful son changed like a switch of a light to a person I didn’t know. He went from being an 18 month old toddler back to a 6 month old baby.

I know you’re thinking how can a child just change over night? How do they go from saying da-da and looking into your eyes and answering to their name to being a statue of a person they once were?

Everyday since then, I can see the light from the goodness of God through my sons eyes. I can’t see him in his eyes and he can’t see me in mine. But I can see God. I can see and hear angels playing beautiful music through his eyes into mine.

You see, my boy isn’t like your boy and he never will. He’s trapped in a body with zero communication, no understanding of the world around him. He has low functioning Autism. My son cannot feed himself or change his clothes, point to anything. He doesn’t even know what the word momma is.

He’s never said momma. Will he ever say it to me? I pray everyday I don’t have to wait until heaven to hear it. I try to understand this and how this happened but I can’t and I know there is a reason why Jameson was made this way. I will be asking God as soon as I meet him, you can bet on that.

Most days I can find the happiness and the joy and watch him be happy and stim to his favorite shows. When I see his nose crinkle from belly laughter as his daddy is tickling him.

That is most days.

Today isn’t that day. And a person in my life told me something recently that I will never forget. This life is hard. It’s bring you to your knees and knock the wind out of you hard most days. But it’s okay, to not be okay.

We don’t have to pretend it’s a joy to have a child who bangs their head on the wall, or screams non stop just because they like the way it feels on their vocal cords. ITS OKAY TO NOT BE OKAY! I refuse to pretend and paint a picture that everyday I find the joy. I can’t and I won’t.

I have accepted that this is my forever. I will ALWAYS fight for my son and his quality of life and I will be happy when we have our victories, but man, some night when he goes to bed, I can cry and ask why and cry some more.

But I get up the next day and carry on.

But please special needs parents remember this, it’s okay to not be okay.

Back Then.

When we met as early teenagers, it was wrong place, wrong time.

Back then, I didn’t tell you that your smile made my heart melt. You smelled so sweet in the early morning class. Your hair was still slightly damp from your morning shower.

I could have loved you back then. I wanted to actually. But like I said, it was wrong place, wrong time.

When we connected at seventeen you gave me something I had never had before.

Stability.

You saved me.

You brought me back to reality. But into a fairy tale I used to to believe in. Something I didn’t think was possible.

And then you gave me my purpose. I became a mommy. With our love we created 3 lives together who challenge us everyday.

Back then, I had no idea that our love would create a foundation for the life we have today. We have something most people I think find hard to find, friendship.

You see we live a life that would bring most people to their knees. If I never publicly wrote about our struggles, most wouldn’t see it. They wouldn’t know. Special needs is a secretive world most don’t know about.

We have two special needs twin sons. They both require quite a bit of care. Lucas who has Cerebral Palsy and a feeding tube with speech Apraxia, is growing and progressing nicely at a slower speed than his peers. But he’s progressing.

We have our beautiful daughter Blakely who we prayed for, for years. She’s everything we wanted and more. There were years we didn’t think we’d ever be parents. We actually lost our first. And then this beautiful baby girl came into our lives. She has totally blessed us.

Then there is my Jameson. Our sweet middle son, who is Lucas twin, and has severe nonverbal Autism. He was given to my husband and I directly from God. He has blessed us in more ways than we can count even on his most challenging days.

Back then, did I ever imagine feeding my baby boy with a tube in his belly? Never. When I looked into your eyes during senior year of high school in English class, did I picture us protecting our son from banging his head against the wall over 11 years later? Not in a million years.

But you stayed.

We both do everyday.

Back then, I knew I loved you. I knew you were my best friend. And you still are today. Without our friendship our marriage wouldn’t be as strong as it is.

This life we live is HARD. Everyday, it’s hard. But with my husbands hand in mine, I know we’ll make it.

Thank you for not just being my husband, but for also being my friend.

Your Smile.

There has been a few things in my life that has truly taken my breath away.

The day I kissed my husband and committed my life to him as his wife, that took my breath.

The night I found out I was going to be a mommy for the first time. The world stopped spinning and I stopped breathing.

My daughter had a febrile seizure on top of me when she was 16 months old and I held my breath while my husband gave her CPR on our kitchen floor.

The moment in the ultrasound room when the technician said, you’re having twins I lost my breath for a few seconds.

When my son Lucas was born, he wasn’t breathing. I held my breath until they said everything was okay.

Those are moments in my life that took my breath, good or bad.

But there are little glimmers of light that take my breath once in a while that most would take for granted.

You see, I have an autistic son and there isn’t many things that make him show emotion out of the blue.

Tickling and scripting movies to him makes him crinkle his nose and giggle.

My daughter chasing him in our living room makes his dimple shine and his belly ache in laughter.

Sometimes he comes into my world and for that split second notices me and grins, it takes my breath every time.

His smiles on his own are very few, far and between but when it happens it’s a light that only an angel can show. It’s so bright and contagious you can’t help but smile with him.

Those are my moments that have taken my breath in life. And now, I have received an angel to give me these breath taking moments every once in awhile and for that, God has blessed me with him.

How lucky am I that God blessed me with a child that He knew I needed? I choose to see these moments as joy and a blessing.

Jameson, my sweet boy, your smile is breath taking for me.

God Will.

I’m sure you’ve heard the phrase, “God will only give you what you can handle”.

I have always heard it over the years and the typical stress of everyday life, people would say it to me.

I’m sure you have also heard the phrase, “God gives special kids to special parents”. That one is thrown around almost as much as, “Man, you’ve got your hands full.”

You see, I have a beautiful relationship with Jesus.

He knows my heart and I try to follow Him in an uncommon way.

So, when people say these phrases to a parent of a special needs child, we know they are coming from a good place. We hear it so much it goes in one ear and straight out the other.

But we still thank each person and carry on about our business.

As a follower of God and a special needs mother, I take the time to explain to people that I appreciate their support and love behind the phrase but God doesn’t think I’m more special than you to give me a more special child than yours.

We were dealt a hand from Gods deck of cards in which he had laid out perfectly and beautifully for each of us. It doesn’t mean it’s because I can handle it more than you. It’s because it’s my journey and what I needed in my life.

Special needs parents all around want to thank you for trying to comfort us in times of our struggles and pain with these phrases.

We also want you to know we don’t believe in them for a second.

Next time try this phrase to comfort us, “God will give you exactly what you need”.

He knew I needed my boys more than they needed me.

They changed me and brought me into my strong faith and for that I am truly blessed.

God gave me what I needed, not what He thought I could handle.

The Blue Bucket.

I have come to realize that there is a controversy over whether to use a blue Halloween pumpkin bucket for Trick-or-Treating.

I always assumed that when someone saw a blue bucket, it would help that neighbor understand that the child was Autistic and may have a speech impairment.

There are some parents who get really upset that it is used because it singles out kids and doesn’t “include” them as normal.

NEWSFLASH.

Our children that have special needs aren’t like other kids.

They can’t handle loud noises, itchy costumes, the hand over hand walking down the street, the scary costumes and the overwhelming anxiety that follows after.

Some can’t say Trick-or-Treat because they can’t speak. Others uses a device to say it.

Would it be nice if we lived in a world that my child didn’t have to be judged because he can’t say the traditional sentence for the candy? Yes. But we don’t.

We just don’t live in that world yet. And we can’t expect everyone to know our kid is Autistic. Most people think when a child isn’t speaking and saying thank you they are either shy or rude.

I am all about advocating and educating, but sometimes I just want to put a sign on my child’s costume or have them use that dang blue bucket so I don’t have to explain it 50 times in 2 hours that my child isn’t a brat.

It’s a universal sign. Like the puzzle piece, or the infinity sign for Autism. We all know what it means.

If you want our children to feel included then hand them the dang bucket and put that sign or sticker on their outfit so momma doesn’t have to point out they’re Autistic to all the neighbors in front of their friends.

We pick our battles. And I for one will just use the blue bucket and try to focus my energy on avoiding the meltdown or helping them with other things than having to tell every neighbor why my child isn’t talking. We use the bucket or the sign, the neighbor then understands, we the eat the candy. The end.

Inclusion.

Inclusion. What does that look like?

I have a hard time with the thought that my children are looked at differently because they are disabled.

I know it’s normal instinct to look at a child with special needs and immediately think, “Awe, poor thing.” But it still hurts my heart.

Strangers do it when they see my sons feeding tube and they do it online when I talk about their struggles.

But even family does it. My sons are not treated the same as our typical daughter. Just because one is completely nonverbal and the other has gestures to show communication, doesn’t mean you can’t talk to them.

Hold their hand.

Talk to them without expectation of words back.

Hug them and show interest in things they like. Learn to feed Lucas with his feeding tube.

Ask for them to stay overnight and not just because their big sister stays. Grow a relationship with them.

They aren’t dogs. You don’t need to pet their heads as you leave. They have hearts and can feel and sense when you treat them differently.

You know how you treat my disabled sons? The same way you’d treat my typical daughter.

My son with Autism may not know you treat him different, that you don’t call and say happy birthday, that you don’t hug on him and talk to him about stuff but his sister know.

There isn’t anyone in this world besides their mommy and daddy who love them like their big sister does. So she will finally get tired of seeing them being excluded and not loved on and she’ll defend them.

She’ll do it in school if someone says anything mean to them and she’ll do it to friends and family because we raised her to protect her brothers.

I mean even doctors, dentists and so on exclude them from normal appointments and have them see specialists just for a teeth cleaning. They are in special education so they are excluded from typical peer classes.

Churches exclude special needs because they don’t have the appropriate training and equipment to have them attend. Jesus loves us all the same so can’t we as humans do the same?

Inclusion.

Can we just teach our children to include ALL students snd friends? Can families who have nieces, nephews, grandchildren and cousins just treat everyone the same way?

Because if you don’t, I am raising a daughter to stand up and say that this is wrong and it may be just at you for excluding her brothers.

Why?

I catch myself staring at my son and drifting off to another place.

In this place I think of what your voice would sound like. I think of how it would sound if you could call me momma.

Over these past few years I’ve realized time has stood still. We have progressed into an older version of you. You look older. But you aren’t.

You are supposed to be telling me no, yelling at your sister as you chase her around the house and telling me what your favorite show is.

Why can’t you?

Why did this happen?

Why do YOU have Autism?

You don’t point. You can’t look at me while I speak. You don’t hand me objects to learn a tablet. We know absolutely nothing what is going on inside your sweet mind.

The why of nonverbal drowns me. I feel like I’m standing in a pool on my tippy toes and water is surrounding my face. Every once in a while, I start asking why and then water splashes me in the face.

A wave of depression hits me. And then I get back on my tippy toes and we continue on with life. But every now and then, that wave comes and splashes me back again.

If I never hear your voice, I’ll never accept it. That’s one thing I won’t be able to deal with.

Yes, I want functional communication and I can find happiness in life but never hearing your voice until I see you standing next to Jesus is devastating to me.

The question of why are you nonverbal and what will our future look like is the hardest for me.

Communication is the hardest hurdle for me. I can’t wrap my brain around it. It hits this momma heart hard. I wish it was different and I pray it is one day. Until then, I’ll just keep asking why.

What I’ve Learned

Dear Special Needs Parent,

In the last few years I’ve learned a few things being a momma to 2 special needs boys.

I look back into my early twenties and see a care free girl who was in college and had a different perspective on life.

Bringing a child into the world automatically changes your perspective because you have someone else you have to take care of. But getting the diagnosis, whatever it may be, changes our hearts.

When my first son was diagnosed, I was confused and saddened but I picked up the pieces very quickly and pushed myself to get him everything he needed to succeed.

The unknown of a feeding tube is indescribable. The day his was placed, I was naive. I pictured him to start taking bottles soon and move past this. Here we are almost 3 years later and my boy still uses his feeding tube for all of his nutrition.

I wasn’t being realistic. I was holding onto something that I dreamed to be true but it wasn’t. He then went on to be diagnosed with Cerebral Palsy and he still doesn’t talk. It’s life changing for me.

His twin brother was then diagnosed with severe nonverbal autism. That broke me. It still does. He has no understanding of language and he can’t communicate at all, even finger pointing.

For a long, long time I wasn’t being realistic about the future. And then my son was diagnosed with Autism and time has gone by and he still doesn’t speak either.

I would say to myself, he will talk. Who doesn’t talk? I’ve never met a person who doesn’t actually talk. But reality is, he may never speak.

The biggest thing I’ve learned is whatever you pictured your child to be in the future is your picture. It’s your dream. Not theirs. Learning to accept what may not be is hard. It’s a gut punch most days. If you can’t accept it, there’s therapy. Your child needs it right? Why not you? Why not your family?

Therapy has saved me and taught me so much about me. My new perspective on life. It’s given me a reason to appreciate that my boys have taught me patience. They’ve taught me a love I’ve never experienced. They brought me closer to Jesus in my own path.

So, give yourself some grace as a special needs parent. Learn to accept the unknown, and when you can’t, get help. We all need support and a group to help us whether it’s from family or a group of special needs parents you met in a Facebook group.

So what happened to that carefree girl in her twenties? Who am I now? Well, I’m a more patient, compassionate person who fights for her kids and they gave that to me.

I will always be grateful that God blessed me to be a mom of 3 beautiful children. Life just looks a little bit different, not less, just different.

My question to you as a special needs parent is, how has your perspective changed and have you found your group who supports you?

It’s life changing when it happens.

Grief

Why do we grieve as special needs parents?

I’ve tossed the term around numerous times about grief.

You’re probably thinking, but her children are alive why would she be grieving?

Hear me out.

When you find out you are pregnant you start to imagine what your child’s future will look like. What your own future may be…

It’s like we are bread to produce children, raise them into productive human beings and then send them off to college or to their job of choice at 18.

That’s what I always pictured. Being a grandma and seeing my sons get married to someone one day and possibly having their own children.

If you’d ask my husband he’d say he pictured throwing the ball around in the front yard, going to football practices, teaching him to work on cars.

We are always told, “no one has a crystal ball to predict the future”, “everyone with disabilities are different”, “they’ll progress and possibly talk”. These suggestions go on and on and on about your children with disabilities.

But what about us parents who are realistic dreamers. Our child may always live at home with us? That they may never speak? Our life will be so much different than I ever dreamed of.

YES, this is selfish. But we do it. We think it. We cry over it. We wish we could change it. But we can’t.

So here’s the grief.

The life you thought you were going to have. It may be completely gone. So we grieve that part and start having realistic dreams and hopes of maybe not college but toilet training. Maybe they won’t get married but they’ll be happy and content. Maybe they won’t talk but they can functionally communicate.

Grief. It comes in all shapes and sizes and it’s okay to have these feelings, but do me a favor and don’t stay there too long. You’ll miss who your special needs child is right now in the present and that’s something beautiful to witness.