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.
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.
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.
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.
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.
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.
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.
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.
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…
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.
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.
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.
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.