Why Saying “no” is so Necessary, as a mom of a Child with Autism.

You cannot people please with a child with autism. Trust me I have tried. I have spent way too much time trying. Way too much time disappointing myself. As a special needs mom, however hard it may be, you must learn the skill of saying “no.” It won’t be easy, but it is necessary to learn this lesson.

You are Your Child’s Advocate and Voice.

 

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For example:

No– that doesn’t work for us.

No– that doesn’t help my son best.

No– that is not the way he will do it.

No– we cannot come to that.

No– that school model isn’t right for my child.

No– that kid cannot treat my kid that way.

No– that adult cannot treat my kid that way.

No– we won’t stay the full time of the event.

No– he won’t say hello.

No– he won’t look you in the eyes.

No– he won’t sit down in a chair for that long.

No– he cannot stay still for that long.

No– he does not learn that way.

 

What saying “no” does NOT mean:

We don’t love you.

We don’t like you.

We don’t want to be around you.

We are judging you.

We think we are better than you.

 

 

What saying “no” DOES mean:

I recognize my child’s unique ability.

I recognize my child’s unique struggle.

I recognize the environment is overly and intensely stressful and possibly traumatic and harmful for my child, and I am going to do something about it.

My child is a priority to me.

Who my child is matters to me.

 

The bottom line is this:

I love him when its hard.

I love him when its easy.

I love him unconditionally.

God has called me to do that.

And, I am better because of loving him.

 

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Easy was Never in the Plans for Us.

Easy was never in the plans for us.

Whether or not I wanted it.

 

I don’t think you ever think life is “easy.”

until you know what not easy is.

 

Relative.

 

The way things seem easy or not,

is always relative to how they were at best,

or when they were better.

 

The better times weren’t easy times either.

But they can seem “easy” relatively.

 

Easy was never in the plans for us.

 

But…

 

Persistence, that was.

Patience, that was.

Learning to climb mountains, that was.

Falling, and getting up again, that was.

Coming face to face with anger, pain, and bitterness, that was.

Grief, that sure was.

 

But thank God.

 

Because, the most important part of our story is this.

That redemption is, always was, and always will be, the best part of our story.

Not because of anything we can do, but because of Him.

Mother’s Day- For the Mothers who Have Lost Their Mother.

Holidays like Mother’s Day tend to be really “loud” in society. Whether it be the sentimental commercials on TV, the “buy your mom the perfect gift” store displays, the social media posts, or just people you know talking about it as it nears. You will know about it coming.

Motherhood tends to be defined by all the love and tender care that we give our little ones from the very start. For many women, motherhood begins with a positive pregnancy test. For some women, it began years before that, when they first started trying to conceive, or even thought of becoming a mother.

Being a mother tests, builds, and redefines everything in you: your hopes and dreams, your fears, your self control, your patience, your love, your vulnerability, your ability to go days without a shower or sleep, in some cases your ability to spend days in the hospital and hear things you never imagined from doctors.

Motherhood typically evokes people to think of all those “firsts.” There is a first smile, first words, first steps, first friends, first day of school, first day driving, first day sleeping in their bed alone without waking up through the night.

Motherhood also, less commonly, evokes the feelings of the “lasts.” There will be the last day you drop off your child at school, because they are graduating and will be on their own moving forward, the last day you bring your child to a play date, the last time they wear all those cute little outfits as they outgrow them, the last time they come running to you to kiss their boo-boo. And, all these things are healthy, wonderful, and beautiful, though sometimes really difficult and painful. But all of these things are always filled with love at the core.

But, there’s a side to motherhood we don’t talk about much. That is, the side of watching your own mother do her lasts. No one talks much about watching your mom take her last steps, watching your mom use the bathroom independently for the last time, watching or helping her to eat her last meal, and hearing her say her last “I love you,” and then seeing her take her last breath. Nobody really likes to talk about the part of motherhood where your mom transcends to the end of her life. Yet we will likely all face it, assuming we outlive her.

And, if you’re lucky, the moments in the years will fill you for the rest of your life- long after the final moments in life have been taken.

I am not going to sugar coat it. This is reality. We all have an expiration date. And even though we are mothers, we are all also born from mothers. One day facing the news that they are no longer here to talk to, or call, or eat with, or shop with, or hold hands with, will change everything about you.

And you will have a choice to make, because you lost your mother. Because, you are still someone else’s mother. And all those milestones you watch your own children go through will make you remember your own milestones and your own mother. And you will have to dry the tears and you will have to keep on going. You will have to smile and give your own children all those moments that will live forever, since we know that none of us will.

And I doubt that it ever gets any easier in time, no matter how people say that time heals. Remember though, not being easier, doesn’t mean impossible. You see, you and I will find our way. And always having some pain over our deepest losses does not mean you can’t always also have happiness. Pain and hurt can, and often do, coexist with joy and gratitude. 

This simultaneous state, is often the price of love.

You will see your mom go from right in front of your face, to only in your mind and heart and go from the room you are in, to only there in photographs. You will see yourself go from having a person you ask all the questions to, to being the one having to answer them all on your own. I don’t imagine you can understand what this feels like, if you haven’t gone through it yourself.

And, if you relate to this, and if you are hurting today, I pray. I pray that you are able to take at least one moment today, and just simmer in the sweetness of all that still is. Take wonder in the moments between the tears of the pain, and deeply feel the joys and the love of who and for what remains. We are still mothers this Mother’s Day. And that will always be a blessing.

Undoubtedly, Mother’s Day changes, when you’re a mom who has lost her mom.

I encourage you still.

Though she’s gone, she’ll live: in the laughter that fills the air over something she used to find funny, in the smell that fills the kitchen of something you loved her cooking, in the way you choose to raise your children, in the way you receive and show love, when stories of her are spoken out loud, and in the lyrics of a song that will forever take you back to the place she created in you.

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My praise of the Lord

cannot be dependent

on getting what I want.

It must be dependent

on trusting who He is.

Extra Worries Accompany Special Need Parenting but so can Extra Faith.

Today is the day. The day we’ve been counting down since the day we got an epilepsy diagnosis for Lucas. We started counting down sometime around February of 2016, after his brain surgery. We have had to restart our count several times over. Every time he had another seizure. Every time we had to increase his medication, we began our count again.

Hopeful, desperate, often disappointed, but always faithful.

We were counting the number of days that Lucas had been seizure-free. The criteria with our neurologist for weaning Lucas off of his seizure medicine is two years without a seizure and having a normal EEG. 

Today is the day.

We have made it to two years. Two years of extra worry. Worry beyond the worries of typical parenting. But we have had so many victories, and so many joys as well.

When you have a child, people say things like your “heart beats and walks around outside of your body now.” In other words, the thing that has stirred up a deeper sense of love than any other human relationship has ever stirred up, is walking around in this world. And that makes us vulnerable.

Your emotions will go up and down with everything that possibly goes on to help or hurt your child. This little heart beating outside of your body depends on you to make the right choices for them. Choices that will result in them having love, protection, shelter, happiness, and health.

When your child has one or more medical diagnoses, the worry, the fear, and the things that you can and cannot control can be drastically intense at times. 

The only way it’s possible for me to make it through these ups and downs is to remind myself of these truths.

God is good.

In the storm, He is good.

In the valley, He is good.

In the fearful moments in the middle of the night that keep you awake, He is good.

On the mountaintops, He is good.

In the sweetness of 2 years seizure free, He is good.

And in the unknown ahead, of whether or not we will have to restart our count, as we attempt to wean, He is good.

I will stand on His promises.

It’s how I made it through yesterday, how I face today, and how every tomorrow will be.

So, in my soul, when worry creeps back in, I will stand on His rock, and find rest.

And it is good.

In my fears, when I think all the what ifs, I will rest on His certainty and promise, that He is in better control than I could ever be, in every situation we face.

And it will be good.

And on the days it doesn’t look good, or feel good, I will be real.

I will get on my knees and cry out to Him. I will ask him the whys. I will yell out my frustrations. I will get on my knees. And I will choose to trust,He is still in control of the things I can’t see yet.

Beauty from ashes, is his specialty.

Making masterpieces from blank or messy canvases.

That’s His specialty.

We are His children, pieces of his heart beating outside of His body.

And I will trust that He loves me enough, to see me through all of my days, whether or not they feel good in the moment. He is working it out, through ways I can’t imagine.

I can’t help my kids up from murky ground if I’m not standing on solid ground while I reach my hand out to help them up.

So here we are.

A countdown begins today.

Day one of our leap of faith that we can remove and stay off of seizure medication safely, starts now.

I will cling to my Father’s hand through this journey, and trust that He is in control.

My Mom’s Story

This is my mom’s story.

 

It’s not one of heart break.

It’s not one of sorrow.

It’s not a fair story either. But I’m going to tell it.

 

It’s a story of overcoming adversity.

It’s the story of smiling in the midst of all things giving her reasons not to.

It’s a story of becoming joy.

Being joy for others was her joy.

To the extent that it was possible for her, other’s joy always surpassed her own.

 

She loved adventure and shopping and good food.

And sharing it was her favorite.

She loved spoiling others with whatever her money could buy them to have the same.

 

They say you see a lot about a person in the friends they keep.

She kept many of the greatest people I know as friends.

Life long friends who suffered greatly along side her as she suffered, but also had endless stories of inspiration and fantastic times together.

You would have to search few and far between to find someone who could say a bad thing about my mom.

 

She never intended to be anyone’s inspiration, but she frequently was.

She was happiest when those she loved were happy.

That will be a great source in us finding happiness again without her physically being here.

 

It seems impossible to move forward, but she always did.

She taught us how, and so we can and will find a way too.

She will never truly be gone, or forgotten. She will live an eternity in heaven, and in the stories and memories we share of her, and in the impact she has had on each one of our lives.

 

 

It is only, until we meet again. Save me a seat near you.

 

Before his Surgery, I Prayed for Sight.

From the day I learned that Lucas was going to need eye surgery, I had been praying. Freshening up on healing scriptures. Renewing my faith in the Lord’s healing power. Reminding myself that there is nothing I walk through that the Lord is going to be with me through.

Lucas has had eye difficulties since he was born. I knew since he was days old that his eyes didn’t quite look right. But, we had been following with pediatric ophthalmologists since he was a bout a year old. They all said the same thing. Wait and see how it looks in six months. Wait. Keep waiting.

His eyes were only looking out of alignment when he was first waking up or very sleepy. The doctors all said it was ok, because his brain is correcting for the problem when he is alert and wide awake. But, little by little, his eyes started to look very out of alignment more and more throughout each day. Especially when we were driving. His eyes couldn’t adjust.

The time was here. Lucas and I had made all the doctor appointments, faced all the daunting waiting and exam rooms that provided endless opportunity for wild behaviors and trying to grab at nearly every eye instrument and machine in the building, while I chased behind trying to anticipate his next attempt, before he got a hold of it. I had read all the surgery paperwork. And this was it.

The waiting was over, and surgery was imminent. That is, it was imminent if we wanted to give our son the best chances to see well, and to prevent his brain from turning off it’s connection to the eye that was causing the most disorganization in his vision. I called my husband immediately after the appointment that confirmed the need for surgery. He was on board. That was confirmation for me, that we needed to fix this. The doctor, my husband, and I all felt the plan should be the same.

And so, here we stood as a family again. We suspected the problem, we endured many doctor’s appointments, opinions and second opinions, finally getting the answer we were searching for. The problem we were seeing was real, and there was a solution. You see, we’ve been here before. Life had prepared us for this, with his brain surgery, with his epilepsy journey, with his autism diagnosis. But it still sets off a pattern of events.

First comes simultaneous shock, fear, and confirmation that we were right about what we were thinking about something being off in Lucas. Then comes gratefulness that we have a specialist who is great and very experienced at doing exactly what he needs done.

Then comes the waiting phase.

The time between diagnosis, plan and surgery.

In this case we had about 3 weeks. Three weeks may not seem like that long, but anticipating a surgery in your child who does not handle change, or things he doesn’t like well, is a long time. Every day there is the concern. The questions in my head. The heart wrenching tug at my heart knowing what he is about to go through and he has no idea it’s coming. The questions in my head: How will he respond? Will he be angry about it when it’s done? Will he be able to communicate his fears, his pain, his symptoms, his feelings? With words? Will I have to guess and interpret his body language? Will I guess right? Will I be able to console him? Will he lose trust in me for bringing him to a place to go through this thing he can’t possibly fully understand?

The answer to these questions became somewhat apparent as he woke up from anesthesia. My husband and I left the chairs they had set up for us in the pre-operation area to move to the recovery room. We went on our usual roller coaster of emotions. It goes from happiness the surgery was over and the surgeon had said it went well, into a sudden surge of frantic adrenaline as Lucas woke up kick and screaming.

The side rail bars represented places he could bash his face in his wild writhing. He thrusted his body so strongly the nurse got smacked in the face while another got kicked in the chest. His face reared angrily out of control left and right and up and crashed back down into the bed, only to repeat the cycle.

Finally we were able to let him try to stand up, and as he tried to open his eyes again, it restarted the cycle of anger and confusion. He tossed himself to the floor. We all blocked dangerous nearby hospital bed corners and equipment from poking him in the eye or from him being able to hit his head on. He eventually lied on his back, and stopped twirling in circles, still for a moment. He yelled with bloody tears steaming down, “I CAN’T SEE!”

With a broken heart, but enough adrenaline to hold me over, and enough experience to know to seize the opportunity, I scooped him up in my arms. If he hadn’t been able to see, then maybe he didn’t know that I was right there with him. Surely, my familiar calming squeeze and hold would let him know it was me there with him. That he was safe in my arms.

I felt his body begin to lose the tension. I squeezed him with the sensory technique needed to overload his body with the input he needed to better regulate. I told him mama’s here. I am holding you. I offered him the choice, “do you want me to keep holding you, or put you down?” The weak little voice came back “keep holding me.”

My husband stood there not knowing what to do. Would it be more helpful for him to say something or do something or not? Nobody knew what to do, but in that moment, Lucas had finally found some semblance of familiar comfort in my arms. From that point on, things went smoother.

We made it home by filling his hands with snacks and a clean gauze he could use to wipe his eyes. When his hands were filled, he was less likely to rub his eyes repeatedly, which of course is not desirable after eye surgery. The doctor had told me that when Lucas rubbed his eyes the first time, it would feel so uncomfortable, that it would be a natural consequence to make him stop. Not Lucas. He has a strong will to get his way. Any time his hands were free, he rubbed his eyes, in hopes he could make them return to the way they used to feel.

I could see his struggle in the rear view mirror as I drove us the over an hour trip back home. It was as if he was convinced that if he could keep rubbing his eyes, then maybe things to go back to the way they were, before surgery. But I could also see Omar, with his tender heart, quick to offer Lucas snacks as needed to distract him from rubbing his eyes.

We were so blessed to have Omar with us, which was a last minute change in plans. I was also blessed to have my husband’s support, even though I didn’t think he was going to make it home in time from work to come with us. Honestly, I thought I was going to be fine by myself. Fortunately, it didn’t work out that way. Eventually, Lucas fell asleep, snacks in hand. Peace for the rest of the drive home.

Back at home, little by little his challenging autistic behaviors increase when he is recovering. His neediness for me increases. He is seeking out comfort, control and confirmation that he is and will be OK. This means my availability for my other son decreases. It means my ability to do anything well is challenged and my struggle with mom guilt and perfectionism peak. It means it takes a lot of energy to not be irritable and on edge trying to manage it all for my family.

However, the goal of the surgery has been clearly unraveling. Lucas’ eyes have become straighter aligned each passing day. He has been happy and active, and I have even been able to sneak in and put his eye ointment in at night as prescribed, without him waking up screaming!

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So, I had been praying for sight for weeks. I prayed expectantly. I knew I was asking for more than just the sight in Lucas’ vision. I knew God was going to do even more than that.

Sometimes you have to close your eyes to see.

Sometimes you have to use your heart to see.

Sometimes you have to let go of everything you thought was supposed to happen, in order to see clearly.

Sometimes you have to see past the disappointment.

Sometimes you have to change to see.

Sometimes you have to use your intuition to see the moment that you can pick up your son in your arms to give him the desperate peace he needs, or see the look in your other son’s eyes that says please pay attention to me too.

Sometimes you have to look again to see what you’ve missed.

Sometimes you have to humble yourself to see.

Sometimes things only come into sight through having faith.

I am thanking God that he helped us never lose sight of the most important thing here. Together, we make it through things like this. God knew each person in my family would need each other. He provided for that, way before we even knew how true that even was.

I am so glad that God continues to use our experiences to see more of Him. He continually evolves me and humbles me. In my weakness and confusion and loss of vision, His grace is sufficient to help me see. Staying near him is like being the tree planted by the stream which has a great supply of water, and bears much fruit.

I asked God specifically for “sight” throughout this, because I knew how hard it was going to be to go through it. I knew I was going to need divine “sight” to see the parts of this that would help me grow, and help me find peace. I knew I needed to see God’s glory and revelation in this. And I did.

I will continue to pray. God please realign my sight, towards your ways, when I begin to deviate towards my own. Amen.

Dear life before autism.

Before we formally got introduced, I had this illusion that I had things under my control.

My job, my home, my independence, my peace, my sanity.

I had all that under control. That is, until I met you.

I slept at night.

I had conversations with people without 99 percent of me focusing on the safety of another person at all times.

I sat on a couch and relaxed.

Relaxed.

I’m gonna say that one again, relaxed.

I don’t even know what that one means anymore.

After I met autism, I stopped relaxing.

I stopped feeling safe.

I stopped having peace.

I stopped feeling comfortable to go out.

I stopped feeling comfortable to stay home.

Yes, staying home with you.

I enjoyed mental breaks. My stomach wasn’t in a knot all the time.

I could relate to people more easily. We had way more in common. I didn’t sound like I was exaggerating everything when describing simple tasks as so challenging.

I could go places on a whim.

Museums, movies, people’s houses.

I didn’t have to worry about the environment overstimulating my child in a way that would lead to massive internal negative effects for him.

I didn’t have to take note of the exact location at all times of my child and know if what he was doing was going to hurt him or someone else, well beyond the toddler years. I didn’t have to take note of whether or not my child’s behavior would baffle or confuse someone else, or deal with people pointing staring and judging or making fun of him for his differences. I never had to worry that anything could trigger my child to melt down, do something dangerous, completely unaware of the harm risked, or run away at a moment’s notice, for some particular reason he came up with.

I didn’t have to worry that despite being potty trained, at any moment he might pee or poop his pants, and get it all over himself and that I might not have a change of clothes, because I thought we were past that phase.

I didn’t have a fear of knowing if my child woke up in the middle of the night, that going back to bed might be impossible.

I didn’t have the extra stress on my marriage.

I didn’t have to worry about his future depending on me being able to help him so intensely, possibly long into adulthood.

But, autism, I can’t say that it’s been all bad.

Though you were uninvited, you are here for a lifetime.

And there is good in you.

Although, the things above are true, I never expected what else I’d get from you.

I’d learn to see things from a totally different perspective.

I’d meet some of the most generous, kindhearted, special people around.

You’d teach me, despite my resistance, to let go of so many of the things I thought I had to and could control.

Everything I ever believed and thought would be forced to be reevaluated, and shifted, for the better.

Patience, acceptance, and understanding would be brought to a level beyond what I could have imagined.

You made me face my anxieties, face my fears, face some of the darkest places in myself, and my own unhealed childhood wounds. Things I didn’t want to, but I’m better for it.

You’d show me what speaking without words looks like.

You’d show me the lengths I’d go to for love.

You’d show me that through the ugliest of ugly, we are survivors.

Through the lowest of the lows, we’d be able to make comebacks.

I had no idea the heights and expert trails we’d be able to navigate, heading up this steep and winding mountain.

I didn’t have a clue, before you, what I was capable of. I had no idea, that watching my son overcome and work through his difficulties would inspire parts of my heart and courage that had never been touched before.

I never considered that the unexpected could be a blessing, when at first, and often after, it felt disappointing, frightening, lonely, unfair, and overwhelming.

Some days, it’s true, I get very angry and frustrated with the borders autism places on our “normalcy.”

But, a lot of days, I can see how you have been the catalyst, autism, that has moved light into areas that were otherwise going to remain in the dark. Areas where light needed to be spread. Autism, you have taken our black and white and sometimes grey world, and lit it up with a spectrum of color, we would have never known otherwise. And, I will count my blessings for that.