Tag Archives: autism

Truths for the Battle Weary Mom

“Aaauuuggghhh!” The high pitched scream was coming from down the hall. ‘Aaauuuggghhh!”, this time louder and longer. I had heard that scream before. I knew what it meant. He was frustrated and angry. The intermittent screams became one long continuous shriek only interrupted by his gasps to fill his lungs to fuel the next one.

Minutes later, I saw two teachers gently carrying the boy under his arms to a room so he could calm down. I knew that he was upset about something, but couldn’t adequately verbalize it. In his frustration, he did the only thing he knew to do when things where scary, unnerving, or just out of the norm, he screamed. And once the screaming started, he, like many kids similar to him, didn’t know how to calm himself.

As I watched him, tears began to flood my eyes. My heart broke for him, feeling frustrated and anxious. My heart went out to the teachers who were calmly trying to help to no avail. But, mostly, I cried for his mom.

I cried for the phone call or note home she would receive telling her that things did not go well for her son. It would outline what happened before the incident, what the teachers tried to do, and what ultimately helped him come out of his meltdown. I know all about those phone calls and notes. I had received many myself.

I wondered. Would this one be just one more in a long line of notifications? Would she question her parenting and the choices she’s made for her child? Would another wave of grief roll in to remind her that her son functions differently than other kids? Would she have someone to support and encourage her? Would she feel alone and isolated? Would she feel like a failure?

I know those thoughts. I know those feelings. I so wanted to find her, look deep into her eyes, and remind her of some truths.

You are doing a good job.

I know sometimes you think you’re failing and it feels like your drowning, but you are doing good, so much better than you think. The fact that you are in the fight, speaks volumes. You keep at it, asking questions, reaching out for help, researching new therapies and treatments, trying new things and new tools, acquiring new skills. You keep advocating, pushing, and pursuing. All the while loving your child in the midst of being tired, frustrated, and just plain weary.

Let yourself grieve

This is a hard road to walk. Its filled with disappointments and unfulfilled dreams. Its okay to grieve. Its okay to be sad. Its okay to be mad. This is not the time to try to ignore the pain by finding someone who has it worse. Acknowledge your feelings. Work through them. And remember that grief does what it does best; it sneaks up on you at inopportune moments, especially when you’re not expecting them. Give yourself permission and time to feel the feelings. Cry the tears. Scream out the frustration and anger. Just don’t take up residence.

Take care of yourself

It’s easy to let the urgency of appointments, homework, therapies, and life rule your schedule leaving little to no time for you. Remember, though, you are vitally important. You can’t pour into your child or children if you are drained and have nothing to give. This is an ultra marathon. You will need strength and energy for the long haul. Find something that feeds you, that fills you physically, emotionally, spiritually. Try yoga, prayer, meditation, reading, painting, running, boxing, whatever works.

Ask for help

I know, I know, it’s hard to ask for help. This is the time to be brave and do it anyway. It doesn’t mean you’re weak or incapable or less than. God created us to be in community, helping each other. We aren’t meant to do life alone. And I guarantee you, there are people who want to love you well and help, they just need permission to step in.

Find your people

Reach out to other parents who have kids with special needs. They know what this journey takes. They can provide you with that understanding look that tells you, you are not alone. Find some parents who are further down the path. Their insights, wisdom, and perspective are invaluable. Find parents who are newer to the journey. While you offer the encouragement and support they need, it’s a reminder of all that you have survived and just how far you and your child have come.

You and your child will be okay

I know there are days when you think you won’t make it and all is lost. You’re searching for the light at the end of the tunnel, but that tunnel is so long. You’re not even sure you will survive. You can. You will not only survive this, but you and your child can learn to thrive. Life may look very different from what you dreamed of or what you wanted, but it can be full of love, strength, courage, and gratefulness.

Moms, if you’re reading this and you’re in the thick of battle, weary and tired, please know that you’re not alone. I see you. And I know this is hard, harder than you could have imagined. So hold on to these truths; write them down if you need. Put them on your mirror. Put them on your wall. Then share them. Share them with other weary moms, reminding them they aren’t alone. You’ll likely find them in the vicinity of screaming kids.

The Freedom of Acceptance

I praise you, for I am fearfully and wonderfully made.  Wonderful are your works… Psalm 139:14


It’s a verse many of us have heard before.  We post it on social media, hang it on our walls, remind our friends, and repeat it in our minds.  We may even say that we believe it to be true.  The problem is we don’t always like who we were made to be; we really want to be someone else.

When my son was in the sixth grade, he became aware of his autism diagnosis.  We didn’t ever hide it from him.  We talked about his autism quite openly, but he didn’t fully understand what it meant until the day he came home from school with his annual paperwork.

Every year my husband and I would meet with school administrators, teachers, and therapists to discuss my son’s status.  We talked about what goals he was meeting, his strengths and weaknesses, his therapy requirements, and his future goals.  The paperwork he brought home was a written copy of all that had been discussed, as well as his diagnosis of autism.  He asked if he could read what was in the packet.  I told him that since it was all about him, he could.  When he was done, he was angry.  He began yelling, “It says I have autism.  I DO NOT HAVE AUTISM!”  I told him that he did; that’s why he went to therapy for all those years, that’s why he had a behavior plan at school, that’s why he was pulled out of class sometimes.  He didn’t want to hear it.  He didn’t want to have autism.

It took several months for him to process his diagnosis.  We spent a lot of time talking about autism and how in manifests itself in him.  We talked about how it didn’t make him less, it just meant his brain worked differently.  We reminded him a lot of the above verse.  It was a hard thing for him to accept.  He didn’t want to be different.  He didn’t want to be ‘special’.  He didn’t want to be unique.  He wanted to be something else.

Much like my son, I find it difficult to accept how God has made me.  I know I have been fearfully and wonderfully made by God.  He gave me certain gifts and talents.  Add to that the life experiences I’ve had, and you get ME.  The problem is, I want different gifts; I want to be a different ME.  I want the creativity I see in my friends whose Pinterest projects turn out even better than the ones online.  I want the voice and musical gifts of my friends leading worship.  I want the drive and energy of people who seem to do three days work in on day without breaking a sweat.  I want the compassion of my friends who seem to always know what to say and do when they meet someone who is hurting.  And I’d like this all wrapped up in a taller, fitter body with a brain that learns new technology without effort.  I don’t think that’s too much to ask.

So God is teaching me to accept the way He made me. To accept not only the gifts and talents He has given me, but also my shortcoming.   This process is uncomfortable because I have to see myself for who I really am, not who I want to be.  I have to accept that although I love music, I do not have the skills necessary to make it on The Voice.  I have to accept that I struggle with new technology and I need someone in person to teach me, not online tutorials.  I have to accept that I work better with outside deadlines because the ones I make for myself don’t help.  I have to accept my tendency to procrastinate, for perfectionism, and negative self-talk.  I have to accept these things and work with them, not wish them away.

My son now fully acknowledges his diagnosis. He talks about how God made him special.  He understands that the autism affects the way his brain works and how he processes things.  He knows that he may do things a little differently than his siblings and that’s okay.  He knows his strengths and continues to learn more about his weaknesses and how to overcome them.  He’s learned coping skills and when to ask for help.  He’s accepted the man God’s made him to be.

I, too, am learning to embrace who I am, weaknesses and all.  In the process, I’m finding freedom.  Freedom to embrace and honor the gifts I’ve been given.  Freedom from lamenting the gifts I don’t have.  Freedom to ask for help in areas where I’m weak without feeling like a failure.  Freedom to celebrate the gifts and accomplishments of others.  Freedom to be karen and know that’s enough…


College and Autism; Learning to Live in the Uncertainty

Right now I’m sitting on a college campus while my son is in class.

My autistic son.

He’s starting his third week of classes.  The first week, he wanted me to walk with him to his classrooms.  The beginning of the second week, he just wanted me to walk part of the way to his buildings.  By the end of the week, he knew where he was going and felt comfortable with just being dropped off at the campus.

Today, he started a new lab for his English class so he wanted me walk with him to the building because he wasn’t quite sure where it was located.  I waited the 50 minutes for him to get out of class only to have him say a quick hello, tell me class was okay, and say a quick goodbye as he sped off to his next class. fb_20160307_19_41_45_saved_picture


It’s been so fun to watch him adjust to this new phase of life; one we weren’t sure he would ever achieve.

He’s thinking more about fitting in with other students and looking more like a college man.  He’s thinking more about his future and what he wants that to look like.  He’s gaining confidence and feeling more mature.  I’m in awe of all that he has accomplished!

I have to say, though, these last few weeks have also been a little challenging for me.  Normally, during the first week or two of school, I email his teachers to introduce myself.  I ask a few questions and give them my information so they can contact me with any problems or concerns.  I tried to let my son manage his classes during his last few years of high school, but I followed his progress pretty closely.  (Particularly since we were in a very bad school district.)

This time around, it’s all on him.  He’s the one who has to communicate with his professors and give them his accommodations list.  And because it’s college, now he has to plot out his own calendar to make sure he gets his homework and projects done.  I can help, but having him do it is part of the learning process for him and me; him owning it and me letting go.

This learning process is different than it has been with my other kids.  Autism has a way of doing that.  It adds a whole different layer of issues and concerns.

I find myself anxious about his homework.  Can he do it to the level that is required?  Does he fully understand what’s expected of him?  Does he understand all aspects of the assignment? Can he really keep up with the work load?  How will he handle himself in class if he doesn’t do well or as well as he wanted?

I find myself nervous about his social interactions.  Will he talk to his fellow students?  Will they accept him as he is?  Will someone mock or tease him?  Will he find someone to have lunch with?  Will he make friends?

I find myself questioning his future.  Can he complete everything needed for his degree?  Will someone take a chance and hire him?   Will he make enough to support himself living on his own?

All the questions.

None of the answers.

I remind myself to focus on what I do know.

I know that when he was first diagnosed, they told us he would not be able to go to college.  Man, did he proved them wrong!

I know that countless therapists, teachers, paraprofessionals, behavior specialists, and counselors pushed him to do what they knew he could do even if he (or I) didn’t think he could.

I know that he has continued to learn, cope, advance, and manage new and difficult challenges at every new stage of life, even if the process didn’t look pretty.

I know that God knows him with all his challenges and has a plan for his life which includes a career and friends.

I know that only time will answer all my questions.

So continue to live in the uncertainty and trust God.  I just wish the reality of living it out was as easy as it looks on paper…

Faith and Autism

How is he going to have a relationship with an unseen God, when he doesn’t seem to want a relationship with people he sees?

That’s the question that circled my brain not long after my son was diagnosed with autism.  I remember standing over his bed one night staring at his face, crying.  It had been a day filled with tantrums and avoidance.  He just wanted to be left alone.  It made me sad to watch his sibling try to interact with him only to have their gestures met with screams and hitting.  The only time he wanted me was when he needed something that he couldn’t get himself.  He didn’t even come to me for comfort when he was sad or upset.  I grieved for a relationship that would never be.

As I cried out to God, asking for help and comfort, questions flooded my head.  How am I going to teach him about You, God?  How am I going to teach him about having a relationship with You when he doesn’t seem to want a relationship with the people he lives with?  How will he know You and Your saving grace, Your comfort, Your peace?

I later told a frienWP_20150408_006d about my questions.  She lovingly reminded me that God had created my son and knew all about his disability.  She reminded me that God already knew how He would reveal Himself to my son.   He knew my son’s heart.  God had it covered.  I was just to trust.  Trust God’s plan.  Trust God’s leading.  Trust.

It seems like a simple thing to do especially when you are talking about trusting God who is loving, all knowing, and sovereign.  But, there have been days when it’s hard.  Days when I wondered if my son could really believe in a God he cannot see.

Trust Me.

Trust Me.

So I trust.  And God gives me glimpses of what He’s doing.  My son uses his beautiful voice to sing praise songs every chance he gets, even if it’s in the middle of a crowded store.  He prays for healing when he’s sick, trusting that God will make him better.  He wears a cross every day so that others know he follows Christ.

I celebrate those things.  I thank God for allowing me to see His work.  And I continue to trust…