The Milestones we Wait For.

My little guy who is part of my inspiration. He has grown so much over the last few years in so many ways. Many people measure their kids’ growth in height or weight or years. In a special-needs world we had to learn early, that wouldn’t be the way we measure growth. Some milestones come years later and some may never come. But today I am going to thank God for all the amazing goals he has met.

He is now successfully potty trained, despite regressions during the last year.

He speaks with many more sentences and better sentence structure.

He can remember information to recall it at appropriate times and apply it to current or future situations.

He has had successful play and social interaction with special needs-peers- with prompting.

He can position his fingers to squeeze and slides the yogurt in a tube with less prompting and assistance.

He can sound out words and read simply worded sentences. He can easily read at least thirty sight words on his first try.

He can write a sentence spelling things phonetically, and sometimes remember to put the period at the end of a sentence! And he holds the pencil correctly even without his grip now.

He can stop when his mood is escalating and respond to prompts for deep breathing and prompts to help him choose ways to cope and substitute what he wanted with something similar.

He learned to start up a swing without a push.

He asks questions that are very reasonable to better understand his world.

Other moms might be celebrating these things way earlier than we do, but celebrating his milestones is still just as sweet a blessing. We may in fact be blessed to have the extra special wait to reach it, so it becomes more noticed and doesn’t just slip by.

He can grab, open, and drink his own mini cartons of chocolate milk from the fridge.

He can try new foods he has a strong aversion to.

He can tolerate brushing his teeth without hitting or screaming.

He rides a bike with training wheels.

He can talk to a therapist/teacher on a zoom meeting for school effectively!

He can play a game of Uno, Trouble, Mousetrap, or Snakes and Ladders by the rules!

And one of my favorites, tonight he learned how to smile for the camera. He cannot simultaneously make eye contact, but his smile melts my heart.

There are many things we will still need to work on, but aren’t we all, only and beautifully, works in progress?

When “It Goes By So Fast.” Grieving the Loss of Your Mom.

“It goes so fast,” my mom said forlornly, half looking at me, half looking down at my three-year-old son, her grandson. I knew she meant watching your children grow up. I knew she meant the amount of time that they would stay small, the amount of time that mothering looks like this. However, I brushed off the comment trying to focus on the now, trying to enjoy them while they are still small. Also, I was mostly all consumed with his autism diagnosis.

But, while I shifted my focus back to my kids, trying to enjoy them while they’re still small, I didn’t realize that the phrase “it goes so fast,” also referred to the amount of time my mother would be alive. Somewhere along life you get this notion that parents will always be there.

But “it goes so fast.” And when it’s gone, there’s no getting it back. There’s no filling that space. There’s nothing that makes it better. It doesn’t matter how many wrongs or rights ever happened between you and them. It just is never OK again.

Things are never the same again. Every moment that occurs moving forward that could be better at all with just an ounce of nurturing empathy and encouragement will scream in your face the need for your mother. And the realization that she isn’t there will kill you again, more than it did the day that she left.

It won’t matter that all the memories can’t be taken away, because no new memories can be shared or made.

You will die a little each time you remember these things.

I think of all the moments that don’t exist anymore. From the light in her eyes every time that she saw me enter the house. From when I came home from college, visited Florida from New York, or just came over from my house or after work.

I think of all the ways that we couldn’t get along.

All the things I couldn’t possibly get over from my childhood.

I think of all the times that I was angry, and upset, and wanted more from our relationship.

I think of all the times I went over to fill her medication.

All the phone calls I helped her make frantically to get urgent doctor’s orders for some of her conditions.

All the restaurants we ate at and vacations we took.

All the Christmases, birthdays, Mother’s Days past.

I think of all the things she couldn’t do with her body, for over a decade from diseases. I think of the weight she carried on her shoulders with her disability every single minute for years. Of the humility it took to have somebody help her with every personal detail of her life.

I think of how unfair that was and I want to scream that I couldn’t change it for her.

I think of all the times that I worried that her wheelchair was going to flip over, going up and down the van ramp, and how it’s better now, because in heaven there are no wheelchairs.

But that doesn’t really help, because it will never replace being in the same room as her again, or having to have ever seen it happen at all in the first place.

I think of how impossible it feels that she is gone. It can’t possibly make sense. It can’t possibly be true. It isn’t fair. It will never be OK.

I think of all the things I can never ask her again or tell her. All the decisions I will make without her.

And it will never be OK again. At least, not in the same way that it ever was before.

But other things can be OK.

Because, you can’t get stuck there in the not OK.

Because, you are still alive.

Because, there are still good things in the world.

Because, there are people who love you and who you love.

Because, there are people who are better off for knowing you and having you in their life.

Because, there are still wonderful people you haven’t met yet.

Because you getting through this is someone else’s hope that they can also.

Because, this isn’t the end of your story.

Because, the new you, the one who lives in the post loss of a mother world, is still important and needed.

So cry, yell, be angry, be sad, be overwhelmed with it all.

But then, find some moments to hold onto.

Find anything beautiful about today, and hold onto it.

And day by day, there is healing. There is recovery.

There is never the version of you that existed before.

But there is still beauty left in this world.

And you, my dear, are still alive.

Embrace the simultaneous pain and beauty of that and live.

You can be brave in the pain.

Piece by piece, you can find the bits and pieces of joy. And string them together, and live.

I am the “I” in IEP.

I am the I in IEP.
I am the mom who knows the most about my son.
Who wants more than anyone else at that meeting table to see you succeed, to see you grow, to see you be and feel accepted, to see you have all the support you need without accidentally giving you too much that that in itself disables you.
I am the one who has sat through countless therapy visits, hour after hour.
I am the one who has learned strategy after strategy to get you to the state of progress you have made.
I am the one who has stood in the face of adversity, from the moment you were born, on your behalf.
I am the mom who has kept records, scheduled and attended the meetings, taken notes, researched for days, upon years.
I am the I in IEP, who knows a great deal about what is at stake.
But we sit at the table and you say to me,
I am the I in IEP.
I am the school.
My hands are tied.
I do care about your child.
The funding isn’t great for our special needs kids who don’t quite need extreme amounts of help.
I will tweak the services he would benefit from to just a little less than what would satisfactorily do.
I will present the accommodations, but there likely won’t be enough staff to assist with them.
I will sometimes care enough to try harder, but ultimately, I am a limiting in the IEP.
I am the I in the IEP
I am the advocate who will stand beside you.
I will fight for you.
I will negotiate for you.
I won’t let you do this alone.
I will call out the specifics that are being missed.
Just one catch. I don’t come for free.
Mom, you’ve got to pay me.
So who is the I that matters most?
I am the I in IEP.
I am the child.
I want to feel safe.
I want to feel loved.
I need your support.
I need acceptance.
I need you to see me.
I need you to see me with your heart as well as with your mind.
I need you to see me as a student but also as a person.
I need you to be sensitive to the communication styles and methods that teach me best.
I need you to see when I am overwhelmed.
I need you to encourage me.
I need you to show me that my areas of need can be stepping stones for success and growth for both me and you.
So you see, with all these “I”s in the IEP, no one is really getting too far.
Why does it feel like I am against you, and you are against me?
What if the school and the parent can turn the I into WE?
We are the partners who will not stop until we have a good plan.
We will be adaptable, consistent and loyal.
Then, we can be the team that will figure this out.
And ultimately, only then, the real I in the IEP, my child, wins.

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.

Advocacy (the beginning).

Advocacy

Parents, hear me.

Advocate for your child.

Attend the IEP meetings.

Communicate with your child’s teachers and administration.

Do not assume they are doing what is best for your child.

Find out.

Speak up, when you feel something is wrong.

Your words are important.

Your feelings are valid.

Your concerns are real.

Hopefully, your child can do this for them self, one day.

But until then, and even then, advocate for your child.

It won’t be easy.

It won’t always get immediate results.

Do it anyway.

Be heard.

Don’t be someone who settles for less than what can be.

Advocate for your child.

In all circumstances.

Don’t let your voice be silenced.

It will echo through the classrooms years from now.

Advocate for your child.

 

Definition:

ad·vo·cate

noun

/ˈadvəkət/

a person who publicly supports or recommends a particular cause or policy.

synonyms: champion, upholder, supporter, backer, promoter, protector, patron.

 

*I am still sorting out my emotions over several events over the last few days.

More to come soon…

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.

_______________________________________

My praise of the Lord

cannot be dependent

on getting what I want.

It must be dependent

on trusting who He is.

When Your Shoes are Bigger Than Mine. I Will Love you Still.

Right now your shoes are pretty tiny. I mean, you are giant for your age, and so they aren’t quite so tiny, like a newborn. But, they are tiny compared to mine. Right now, everything about you is small, because you are five. This means things like your giggles are heartwarming, and your smile is delicious, your laughter is contagious, and your hugs are the best. It also means, when things are hard, I can calm you down. I can pick you up. I can sit you in my lap. I can help you up when you fall.

You fit in my embrace like a mother and child were always meant to fit together.

But, time has a way of continuing on. When we want it to, and when we don’t. One day, your tiny feet are going to be bigger than mine. Our set up of shoes in the front of the house will one day have mine as the smallest, even smaller than both of my little boys’.

I know this happens to everyone, you see. But, when you have a child with special needs, it really makes you think. Will you be able to live on your own one day? Will you be able to have a job? Will you be able to start a family of your own one day? Will you be able to take care of yourself? Will you have sincere friends?

Sometimes I think to myself, God knew I’d always want a special someone to love me, and for me to love and take care of. I have wanted children since before I could even multiply by double digits in school. I think to myself, maybe God gave me this precious gift of having to care for my child longer than most. Or, maybe my child will surpass every one of my concerns, and be totally independent.

No one can predict the future, and most of us know the saying “man plans, God laughs.” Other than practical things like financial planning, and having an extra bedroom in case, I cannot know what Lucas will need as he gets older.

Sometimes I look at the idea of him needing me and my husband forever, and it seems comforting. I will know what he needs, and I will be right there to provide it.

Sometimes, if I am honest, it seems scary.

What if his behaviors are too much to handle, once he is fully grown and possibly over 6 ft tall? What if, God forbid, something happens to me? Who will know Lucas like I do? What if his brother winds up having to sacrifice a lot to take care of Lucas if I am gone? I know these things sound pretty extreme, and maybe you are thinking, why should I think about all that? Unless you have been in my shoes, don’t judge me.

When my thoughts tend to go most berserk, I remind myself, God will be there then. God has already made the way, and I need not worry, but give my worries to the Lord. I know that I don’t have to have all the answers to know that a way will be figured out somehow.

What I can say is this.

To the extent that I have control, I will be there.

I promise you this. I will love you endlessly. I will care for you endlessly. I will support you with all that I can. I will help you when you need it. I will teach you everything you can learn, to do things for yourself. But, when you can’t, and you need me, I promise you, I will be there, even when your shoes have long outgrown mine.

Photo credits.

The title picture is the pair of a mom and son shoes next to me and Lucas putting his shoes on after his piano lesson. As we walked out they walked in. And in that moment it really sunk in, what it looks like to special need parent, long into bigger shoe sizes. The blue shoes in the picture belonged to mom, and the black shoes were her son’s. Her child was taller than me and a teenager. She was older than me, and I couldn’t help but think of how it feels to be on this journey that long.

I took the conclusion picture at a concert I went to. It was a Christian concert that I had been so excited to see. In front of me was a mom, and her adult son with special needs. She still had to hold his hand. My eyes filled with tears and I couldn’t help but think of the reality of it all. Her love was something you could feel just by being near her. But so is the tired of the journey. But it is all and always worth it. In God’s strength we press on. Amen.

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.

The Other Moms

The mothers over there. They stand together, smiling, laughing, exchanging stories. They look up occasionally to scan for their child, and resume talking without much of a second thought about their child playing. They talk about regular things. Kindergarten next year. The play date they might have this weekend.

We stand over here. We stand close to our children. We know they might hurt themselves or someone else, or break a serious rule, or run away, or into the street or parking lot. We know that at a moment’s notice we have to be ready for a meltdown, that you will think you relate to, but you can’t.

The mothers over there. They share their regular lives. They don’t think twice about it. They see us over here, and probably don’t think twice about that either. But I think twice. I think to myself, what will this be like in a few years. When our kids are older, will you still say hi to us? Will your children still want to know and be friends with Lucas? Will they accept him with his differences in interests and personality? Will they listen to his latest obsessive interest? Will they entertain his odd requests for how to play? Will you say hi to me? Will it be out of obligation? Will it be genuine? Will I be able to look away from him long enough to answer and converse? Or will I just wave, smile, and nod, and look back at him?

We stand over here, as the differences between special needs and typical begin to get larger. We stay close as you are able to slowly separate from your children. We know what can happen if we don’t. Siblings begin to trickle out to the yard. Over there, you greet them, and converse. We still can’t take our eyes off our kiddos with extra needs. Our children’s siblings have gotten used to not being able to talk until we are in a safer place.

This is a walk the whole family does together. Together we are strong, but together we are also quite separate. We stand over here, because the differences are going to show their face in one way or another, despite our efforts to unite. My child has many extra needs. My child needs significantly extra supervision. Your child will outgrow this stage. And that will forever separate us. All I wish is that as the differences become more apparent, your efforts to be a part of our life, and to include us, grow at the same rate.