Dear Quarantine Mama who is Struggling.

Quarantine Mama,

I see you. I hear you, I understand how you feel. I probably am you. I want to tell you that everything you are not being today, is OK. You don’t have to worry and feel guilty about not being enough. This has tested you, and pushed you to limits. This has changed everything, and all that you have known is different. But it’s OK to take time to adapt to the new normal.

I frequently see posts about people’s new hobbies, newly cleaned and reorganized closets, or rooms in their homes. That is fantastic, if that’s how you cope, and what you enjoy, but not everyone is feeling up to things like that. If today all you did was let your kids watch TV and play video games, you are still a good mom. You still love your children. If your children annoy you to pieces at times, and you hide in the bathroom to get a minute to yourself, it doesn’t mean you are a bad mama.

It might mean you aren’t perfect. But you were never meant to be, that’s an impossible standard. So let’s get rid of some unrealistic expectations.

  1. Everyone else’s needs will come before your own. This is like the “put your oxygen mask on before helping someone else.” You can’t keep up with everyone else’s needs if you aren’t taking care of yourself. This will eventually lead to being overwhelmed or so stressed that you make yourself sick. Please do something for your own emotional and physical needs for a few minutes each day.
  2. Everything will fall apart if you don’t handle it. Not true! The dishes will get done another day. The toys will get put away when you get around to it. If you miss an appointment accidentally, show yourself some grace. You can’t remember it all, every single time.
  3. You will be a super involved loving mother to your children all the time. Try as you may to be part of every waking minute of your children’s lives and entertainment, there will come a point in time where you need some time to yourself. You need to have your own thoughts, adult conversation, and a friend who can listen to the hard parts of your day. Reach out to someone who is safe, who loves you. Trust me, they won’t mind hearing you vent, if they care, and if they have ever gone through anything similar.

So, if today all you have is ordering pizza (and an amazon package), there is a mess in at least two rooms in your home, and your kids don’t have you as a constant playmate, or you don’t play that board game for the tenth time in a row, it’s OK. Days like that will happen, and you will be better for them for showing yourself grace, and considering yourself important. You are not a bad mom. You are a human being, who needs permission to take a break. So here it is. Here is your permission, to breathe, cut yourself some slack. Your kids know you love them. And tomorrow can be a better day. And if it’s not, nothing says you can’t have two meh days in a row and still see better days ahead.

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?

The Scars

Up until recently, I had always given Lucas his haircuts. He is squirmy, sensory averse, resistant, and uncomfortable during them.  I just couldn’t honestly imagine what on earth bringing him to a barber and expecting him to sit totally still and cooperatively would even possibly look like. Then there is wait time to consider, where he had always spent climbing and crawling over and under the lobby chairs, whenever big brother was going for his haircuts. Then of course, there’s my husband, who wants me to let it grow. Lucas does have some pretty fantastic curls. I often considered that God gave Lucas those curls to cause people to come up to us and tell us how beautiful they are. He must have heard that a hundred times from strangers in public.

 

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But the curls were causing a problem. Every time Lucas would get sweaty, or when swimming or bathing came up, he would start to get very angry, anxious, and act out. He hated when his head felt hot and sweaty and would drip down from those curls to his forehead and neck. Understandable. We live in the hot Florida sunshine, and it is inevitable that one will sweat while just standing outside, never mind trying to run and play. The bottom line is that when I offered to cut his hair shorter to reduce how long it took to dry, I didn’t really say it in a nice way. He was refusing to shower, and I thought he was going to scream “No way!” and get right into the shower. He had mostly hated haircuts prior to this. Anyhow, the answer wound up being a definite “Yes!”

I figured, if it would help him feel free to play outside and and swim, and important things like shower daily, then we would try. The first few haircuts I did at home with an electric shaver with starting with level 7 or 8 at the top and fading to 3 to 4 blades at the bottom. I figured that was as short as I was comfortable going without making a bald spot accidentally. Cutting his hair at home had mostly good results, from a behavior standpoint, but I am not a skilled barber by any means. But we got the result, way more compliance with showers. Since it had been going well, and since Lucas agreed, we decided to get a haircut at the barber.

I set my expectations very low. I was fully aware that we might leave the shop with only half a head having a haircut and half remaining uncut. Trust me, I had learned by then not to expect things to go as planned, and to have a way out early if needed. I already planned that I would just touch up the other side at home if it came to that. But I had my fingers crossed it would go well.

We arrived at the shop. Lucas knew what to expect from Omar, his brother’s turn many times before. I was nervous, but followed Lucas’ lead who seemed to be ready to comply with the person about to cut his hair. I gave them no warning. I did not mention autism. I did not mention ADHD. I just said he doesn’t want to feel sweaty when he gets hot. Then I shut my mouth, as hard as it was not to micromanage, I knew Lucas and the person had to establish their own trust and connection. If I was a nail biter, I would have been biting my nails about then.

Everything was going surprisingly well, and we decided to take it really short. IA nice faded cut, would be something I couldn’t really do at home. She adjusted the clippers and just like that his curls flew to the floor. I was probably holding my breath ready for him to decide he was ready to stop right there. But through all this, he was actually doing amazing. I needed to relax. As I tried, she kept cutting quickly along to help get things done before he was going to be done with sitting still. As she came around to his right side where I was, the hair quickly flew this way and that way, and all of a sudden, just like that, I realized. The scar he had from having brain surgery, as a one-year-old, had been hidden for the last two years. The scar becoming more and more noticeable, seemed like a curtain being pulled away, revealing without my permission, the the surprisingly raw nature of the matching scar in my mama heart. It surprised me, because, we had been able to put that behind us, having been cleared from all recent EEGs, and MRIs. Now, all of a sudden, here it was screaming in my face “you can’t pretend I don’t exist now.”

I immediately regretted the decision to cut his hair that short. The scar was so obvious. Everyone would see it. I was going to have to deal with questions about it, and I was going to have to look at it every day. A swarm of thoughts went through my head. How will I explain it if he asks me about it, should he notice it in the mirror? What if he winds up facing something that serious again? How will I be able to handle that? The words of the neurosurgeon echoed in my head. “We will make an incision that will be in the shape of a question mark… We will take away a part of the skull and access his brain…” That is enough. I certainly did NOT want to think about that again, now that we were so far passed that hard time.

 

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Yet, as much as the scar brought up painful memories, it also made me question myself. He is, and always has been, my beautiful Lucas. He is my amazing gift from God. He gives me reasons to smile every day. Why did the scar effect me so deeply? I mean, we had already lived through the experience and survived and I knew he had the scar. Maybe it was that the scar represented the hard parts of this journey, the frustration I was still holding onto that things have been so hard for us, that nothing had come easy and it wasn’t fair. And it is true, but it doesn’t negate the beauty of things. And I had to look harder to find that.

Emotional and physical scars are very similar and can be intensely linked. Scars represent each time something hurt. But they also represent each time something fought hard to heal and successfully recovered. Hiding scars doesn’t make them go away. They must be faced no matter how hard. Even when facing them causes pain. I will never forget the day he had surgery, we had this picture from right after. His operation had taken only 45 minutes, and I was still kicking myself for missing the call from the OR about his status. Who does that? Who misses their son’s neurosurgery OR call about his brain surgery progress. Well I did. But, when I saw him, nothing about me felt sad in that moment. I just thought to myself, he made it. He is still here. And just like that, scars can go from scary to thankful. Horribly tragic to magical. Near death to so alive. So today I will choose to be grateful that the scars don’t have to reactivate pain, but they can also help me remember the gifts throughout it all.

 

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Or we hide from them, because they cause too much pain.

I will choose to embrace them, because they tell our wondrous story.

While the damage and the hurt remain on one end of the scar, on the other side sprouts the bud and the bloom. There is usually an ebb and flow to life, and where one traumatic thing happens, there are also wonderfully amazing things going on, if you look close enough to appreciate it. Maybe it is a relationship developing with someone. The acts of kindness your situation inspires in others that bring you to tears when you least expect it. The stories people feel led to share with you of times when they overcame similar struggles. You find out ways that God has painted masterpieces in other people’s lives, and it gives you something to hold onto.

So, his scar was made in the shape of a question mark. Maybe, beyond the medical importance of that technique, there is value in that. It is a very good thing to remind myself to ask. Ask, when I look at that scar, am I going to see the pain, or am I going to see the wonder? Maybe, sometimes, the scars make us better.

 

 

 

This was drawn by my older son Omar. When I told him I thought it was beautiful, he said to me, I didn’t know if people would like it with the scar on it. Turns out, the actual coloring book didn’t have lines for the scar. He had added that himself. And I think the picture is perfect.

 

 

Intermission: Parent Assist INC.

As a mother of a son who has autism, I know how hard it is to find time for yourself amidst all the therapy visits, advocating, meetings, and behavior management plans. Specially trained sitters can be hard to find and cost more than sitters for neurotypical children.

God has laid it on my heart to establish Intermission: Parent Assist Inc. to help other moms who are going through journeys similar to what I have experienced. I want to see moms who are struggling to juggle therapy schedules and special needs and advocacy be able to have a moment of respite. Our mission at Intermission: Parent Assist Inc. is to help these moms get some time off to tend to their own needs, by covering the fees for babysitting services. We will help you find and pay for babysitting services with staff who are trained in how to work well with children on the autism spectrum. Come check out our FB page!

If you are a mom in need of special need babysitting, reach out to our email address parentintermissionassist@gmail.com.

If you are an OT, RBT, BCBA, or have experience working with children on the autism spectrum, and you would like to join our cause and be a babysitter for moms in need, please email us at parentintermissionassist@gmail.com to discuss! We’d love to grow our team!

If you would like to donate a tax deductible contribution towards helping special needs moms get a break, you can donate here!

Click Here to Donate to our Cause!

Thank you so much to all who have contributed encouragement, prayer, time, and money to our mission! 

 

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.

Who Said That was True? Uncovering the Lies of Anxiety.

Who said there was only one gold standard way to do things right?

Who said you don’t do anything on that list as well as you should?

Who said you should be more?

Who said the talents you have are not praiseworthy?

Who said you should act a certain way?

Who said you aren’t worth it all?

Who said you don’t look good enough?

You don’t speak properly?

You don’t wear that outfit well enough?

Your hair is the wrong color?

Your body is the wrong shape?

Your position at work isn’t honorable?

Who said you don’t live in the neighborhood you should?

You don’t have the house you ought to?

Who said you don’t parent like you should?

Send your kid to the best school?

Have the right car?

Who said you can’t do any of these things right?

Who said you never will and you never have?

Was it someone speaking over your life as you grew up?

Was it someone at a job you once had?

Was it a teacher?

A significant other?

Someone at church?

Someone you looked up to or a close friend?

Who said it?

Someone you wanted to say more?

Someone you wished praised you instead of put you down?

Someone who’s approval you thought meant everything?

So maybe someone pretty important said it.

Think about it.
How did -whoever said it – get that much power to influence you as strongly as they have?
Tell me, how did they convince you?

Is it because you believed it that made it hurt so much?

Who perpetuated its value and hold on you?

That part came when you kept repeating it to yourself.

In the name of Jesus, break the chains, and speak new true words over your situations. Believing the words that come from the Lord, who loves you like no one else could, changes everything.

Rebuke all the lies that have ever held any power in your life and walk forward- like a heavy weight released from you, freer, happier, complete, and whole.

And try, guard yourself, clothe yourself, with the wisdom and value God gives you- so as not to give away your power to the wrong person again.

Realign.

Nobody’s opinion or words mean more than your Heavenly Father, God’s.

But you can’t really ever hear His, and live His, while you are holding onto everyone else’s.

Stop for a minute and think about who said it, before you continue believing it.

So, who really said it?

The enemy or the victor?

The one who opposes you or the one who is for you?

Was it a liar or the author of truth?

Who said you can’t achieve your dream?

Who said that you are incapable?

Insufficiency equipped?

Was it you who set your limits?

Was it you who questioned your own worth and ability? Was it from a fear of coping with disappointment or of failing to achieve anything great?

If He put it in your heart and you seek it, you shall find it. You shall receive all that you have asked for in His name. It may not look anything like you thought it would or should, but that’s for your best that He does it that way.

So next time the enemy tries to stuff you down, and tempt you to believe that you are anything less than you are, remember whose you are. Remember what’s been done for you. And rise. From the ashes. A new creation, born again, in Him.

You, my friend, are a beautiful creation, infused with God breathed wonderful giftings- you are not stuck- and as you continue to put Him above it all, you are unraveling into the miracle God is making of you.

Maybe you’ve believed it for most of your life. Does that make it true? Did you ever stop and ask, but “who said?”

So, what is next?

What voice will you choose to believe today?

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…