Recently a friend of mine asked, “What should I do when my child does something wrong?” She is a great momma with a young son with autism. He has had the diagnosis for two years, is receiving therapy weekly, and has a fabulous kindergarten teacher and support staff at school. So I think what she really wanted to know was, “How do I respond when my child, who is struggling to learn acceptable social behavior, misbehaves at school? And how do I handle the guilt of not being a perfect parent?”

It would be easy to pretend like I’ve got it all figured out. I’m a teacher and I’ve seen misbehavior in the classroom that stems from trauma, emotional issues, ADHD, autism, or a learning disability. Logically, I know misbehavior doesn’t mean “bad kid.” But at home, my story still sounds like my friend’s. I’m still asking questions. I still feel the doubt and insecurities of worrying if I’m doing the right thing. Yet, I’m battling these questions and doubts as I’m daily trying to be an advocate for my child.

Advocate:

1. a person who pleads for or in behalf of another; intercede

I am not an expert, just a mom. My family is not new to the diagnosis of autism. We have behavioral charts, visual schedules, modifications, and a team of loving caregivers to help teach my child how to behave in a way that is suitable to the classroom environment. But we still have bad days. So I get to practice this on a daily basis from a parent perspective. And practice makes perfect, right?

Imagine it’s one of those bad days. You get the dreaded note or phone call… your child hit/kicked/name called/refused to work. You might even be asked to come pick up your child if it’s been especially rough day. The long walk to the principal’s office. The shame of not being a perfect parent with a perfect child. You may feel judged… even when you are not.

Deep breath, momma. Don’t give a knee jerk response. Just breathe. And these are a few things you can try:

 

Ask questions

Ask to be told exactly what happened. Was the note home unclear? Send a follow up note or email asking what you would like clarified. Don’t jump to conclusions.

Personal example: My kid had a terrible Monday. It even started out bad at home too. When told he was having a meltdown at school, I immediately placed blame… on myself. That weekend has been unstructured. He spent the night with my in-laws so I could have a date night. I knew he was frustrated that morning. Basically, I guilt tripped myself without even asking what happened at school to set him off.

Whether you jump to place blame on yourself, the teacher or even your own kid:

Wait.

Ask questions.

Investigate further.

Walk it out.

Take a walk and ask your kiddo to talk about it. Why was it a bad day? What was the hardest part? How did you feel? How can we respond better next time?

Let’s be real here, if your child struggles with communication, this might be hard. So I ask questions then wait for a response. If there is none, I model my own self talk. “We don’t hit our friends, even when we are angry.”

So we just walk and talk.

I’m sure my coworkers have seen me walk my kiddo in the hallways asking deep questions. This is the same approach I take for my students as well. Conversations have value.

Sometimes we even wait until the next day before asking if it’s been an especially tough day.

Time In

At my house, we do Time In instead of time out. Like time out, you find a safe spot away from others to reflect on your actions. Unlike time out, this isn’t an independent activity. A parent or caregiver guides you through reflection and even a calming activity.

Example: My good friend’s son was diagnosed with Aspergers at a young age. Even trips to the store were a struggle to maintain socially acceptable behavior. She would hold him close, calmly whisper in his ear that she loved him, spoke a bible verse, then restated the expected behavior.

This is by far my favorite way to handle misbehavior in public. My parents were a leave the store and you’re getting a spanking when we get to the car type, so this is new to me and I get frustrated more than I would care to admit. But there is NO one who can speak ill of you lovingly redirecting your child. It stops the behavior, calms them, and redirects. (Ideally, it works… epic sensory meltdowns can be way harder.)

This concept reinforces the concept of unconditional love I want to be felt in my child.

I’m sorry notes

Okay, this may seem lame but this has been really successful for us.

I understand hitting and kicking during a meltdown. It’s not okay, but I get it. However, any time my child has hit or kicked in either a meltdown or as purposeful response, it’s not okay. Hurting people even if we don’t mean to has to be addressed.

Example: We write I’m sorry notes. At first, I would write them and he would draw a picture. Then he was able to start writing his name. Now, he can write an entire sentence. The whole time we discuss expected behaviors, what we might do differently next time, etc.

And selfishly, my favorite part is that, the child, teacher, or person effected knows we are trying. Trying to do better, trying our best, trying even though we aren’t always successful. (Can you hear the echoes of my mom guilt?)

No double punishments

When my nephew gets in trouble at school, he gets grounded at home. While this is an excellent concept for a typical kid who only struggles occasionally, this sucks for us. We believe in no double punishments. We will talk it out, address the issue, write I’m sorry notes but I’m just not doing double punishment. My home life would deteriorate and my child would be scared to talk about his day.

Ask for help

Admit when you don’t have the answers and ask for help. To do this best, you also need to monitor and document behaviors.

Monitor and document: keep a log of behaviors. (Our school has a daily behavior chart that is sent home and I keep them all in a binder)

Ask for input. Give the list to a heath care provider or therapist.

Maybe an extra sensory break is needed. Maybe it was just a crappy week? Maybe Mondays are just hard after a weekend and we should just change our expectations for that day or add extra support?

After you have asked the questions, monitored and documented behavior, together you can adjust how you do things if needed.

Seek Encouragement

I know I am not suppose to let my child’s bad days get to me… but they do. Sometimes, I take it personally: I blame myself, doubt, second guess my judgement or just feel like a “bad” parent.

There really is only one thing that helps this: encouragement from others. I text my friend about my son’s lousy week. I expressed how tired I was, and the doubt I was feeling. She quickly rebuked it. She called me out. She told me I was an excellent mom and that doubt creeping in… it wasn’t from God. We all need friends like that.

Another mom, older whose children are grown, overheard my conversation at a women’s conference. She told me about her two children: one perfectly well behaved and mannered the other was in the principal’s office on a weekly basis. This other momma, beautiful, strong and seasoned, had experienced similar struggles and doubt. You know what she told me: it will be okay. She now has two grown law abiding children that love her.

I hope you too can find encouragement. Perhaps, maybe by reading this right now. 

Celebrate the good

Even after a crappy day or week; Especially after a crappy week; celebrate the good.

Make time for a date night with your spouse. Have a movie night snuggled under the covers with the whole family. Say I love you to the moon and back. It’s not a reward for bad behavior, it’s a reminder of our unconditional love: we won’t let the bad days define our children … or us.

We aren’t there… yet.

This is hard for me. Sometimes I want everything fixed right now. Sometimes, I want that A honor roll, well mannered, perfect kid. (PS that kid doesn’t really exist… and if he did he would be boring and not near as funny as the kid I actually have.)

We are in a “still figuring it out” season. Our therapist even told us, she was happy he was getting into “trouble” more. It was because he was attempting to be more social but not being successful …yet.

There is power in… yet.

Dear Momma,

Though you doubt and are filled with insecurities: You are enough.

Though you don’t have all the answers, you can be an advocate for your child.

Though you fall and stumble, you can get back up.

Your child’s successes nor failures do not define you as a parent.

You are tired and worn out; take time to fill yourself back up. Read. Rest. Regroup.

Most of all, give yourself a little grace.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

2 Corinthians 12:9

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

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Recently, a friend sent me a podcast of a mom who had not one, but two children diagnosed with Autism. It was the story of her journey. My friend asked my thoughts, I replied, it was good; but her journey sounds nothing like mine. I friend then replied, “So, tell me your story.” So here it is:

When my baby was born, I felt so blessed. We had been waiting several years to have a baby. Then, like many new parents that blessed feeling was overcome with sleepless nights and as luck would have it, a colicky baby. Despite the lack of sleep, my baby boy X was absolutely beautiful.

At our 9 month well visit our Pediatrician asked a few questions and then proceeded to give me a form to fill out. The nurse called me the next day, “Your son seems to have some delays. We are giving you a referral to ECI” With very little explanation of this Early Childhood Intervention, I took down the phone number.

As a new mom, when he wasn’t rolling over, was slow to learn to sit up, or didn’t match the “Baby Center” definition of typical development, I took note. My family all said stuff about every baby developing at their own pace. So I was concerned, but no one else was. We had a healthy and beautiful baby. Even the doctor seemed to be pushing us off on someone else.

An ECI evaluation showed a 40 percent gross motor delay. We started some very basic Occupational Therapy home visits. After three months, X met his goals so I stopped the home visits.

Then, other issues had started to arise: mostly sensory and eating related. He had started refusing to take a spoon after I attempted to move up to chunky baby food.

For his entire life I had made cute, healthy, organic homemade baby food. I didn’t understand if I was doing everything by the book, why was he refusing to eat? The OT told me that babies with gross motor delays often have delays or less strength in their tummy muscles. So I started treating him like he was three months younger in regards to food. That helped… for awhile.

Our pediatrician was no comfort or support… so I moved on. I found one who told me I was a good mom and gave me useful suggestions and guidance.

But the delays continued.

• He didn’t walk until he was 17 months old
• 18 months he started throwing epic 45 minute inconsolable fits.
• By 2 years old and he said maybe 5 words.
• Also at 2 years old the food battle got real… he quit eating, lost weight, and we had weight checks, food diaries and such. The doctor concluded… feed him whatever he will eat and lots of it. I said goodbye to my hippie dreams of a kid eating fruits, veggies and quinoa. I traded that for peanut butter crackers and protein shakes.
• By 2 1/2 the phobias, fears and anxiety peaked. Fear of loud sounds, fear of water, fear of small or unfamiliar spaces. We stayed home more. I became more isolated. Why would a child who had never had any trauma be experiencing such fear?

Out Pediatrician recommended a developmental pediatrician, but our insurance was… let’s just say… a joke.

We filled out paperwork for the developmental pediatrician. This was heart wrenching. Every question they asked pointed directly to an issue we knew was there. His whole life laid out on paper.

This began the waiting game.

Waiting for an appointment.

Waiting for Insurance approval.

And the rabbit hole of internet research.

This entire time family and friends never really saw the whole picture.

“He will get there.”

“He is just being picky.”

“His dad was like that when he was little.”

“All kids go through phases like that.”

“You are just not being strict enough. With my kids I…”

While this was intended as support, it made me feel like I was overreacting. Or worse, just not cut out for parenting. I must be a wimp, I thought.

Around age 3, I had enough waiting. I paid for an evaluation myself from a private OT. It revealed specific areas of concern. I couldn’t afford the private therapy. My pediatrician suggested I do one or two sessions and use the information to give him OT myself. And that’s what I did. Sensory table play, fine motor skills, playing ball, working on words. That’s summer my house became a therapy center. To the outside observer it just looked like I was being super mom and created a preschool at my house.

Then the waiting was over, at age three and a half we had an appointment with a developmental pediatrician and an evaluation from our public school.

As we approached the Developmental Pediatrician’s office, we saw the four story building and cringed. A trip up an elevator that brought X to tears and filled him with fear. The tiny office filled with people and noise was too much. The doctor saw him in all his messiness. After an hour or so of evaluation she asked about our purpose. We stated that we desired some sort of diagnosis’s that our Insurance would cover therapy. She said she would need a follow up visit to confirm, but she felt very comfortable saying X had autism with obsessive and restrictive behaviors.

The days that followed were filled with tears: mourning the loss of the life I thought and dreamed I would have. At the same time rejoicing. Rejoicing over the fact I wasn’t overreacting. I wasn’t a bad parent. I wasn’t doing it all wrong. There was a reason for his behavior, and it wasn’t me. This lifted a huge weight of guilt off my shoulders.

The weight of guilt however was replaced by fear of the long journey ahead.

My husband was very supportive. He went to every doctor visit. But still he was very quiet and didn’t have the same reaction I did. He saw it as a problem we could fix. Problem, solution, we got this.

My family didn’t really understand either. My dad insisted that we start saving money for X’s long term care. He feared the “what if” he could never work or take care of himself. Those thoughts never crossed my mind and seemed a bit overboard. I was still focused on paying for the short term expenses.

In contrast, my sweet in laws didn’t see any problems. Just their beautiful grandson. He was fine. They let him be who he was, but didn’t talk much about it. (Please note: they are some of the few people I’ve trusted to care for X overnight or for long periods. So their relaxed, “He is fine” method actually works for the most part.)

However, I had a few close women from my bible study group who soon would understand. Our ladies bible conference, IF Gathering, was two days after this appointment. It only took a few worship songs, a powerful speaker, and a few to the point conversation cards to tear open every wound for my journey. The tears poured out… in public. My brokenness was obvious. But my pain became the shared pain in our table group.

We had a follow up visit a month later. Followed by a evaluation from our public school. They agreed with the diagnosis.

We started a PPCD program, a special education preschool type program, at our public school. We started receiving support and School based therapy.

The approved private therapy center was an hour and a half away. After repeated appeals to our Insurance… I fired them. I switched to a higher cost plan my job started offering. To balance the cost, I dropped my husband from my plan.

At age 4 we started pre-k with inclusion support and weekly OT and Speech at school and additional weekly private OT. I could write a book on this exhausting process. But we finally had a plan and a goal.

Our journey didn’t end there. There was and is more to come. Follow up appointments, therapies, teacher conferences, evaluations and re-evaluations. Insurance battles and finding creative solutions. But only one goal: improving the quality of life for our child and our family. And I will say, it has improved. We have new and different struggles, but that initial search for a diagnosis is over.

At the same time, I didn’t shout from the rooftops his diagnosis. It took a good year before I could speak it out loud without choking up. I refuse to believe that my child is defined by a diagnosis, but he is better understood because of one. I didn’t long for the label…. but I needed it.

“We have labels that are tied to funding. We have labels that are tied to resources. But the only label you (the Teacher) should be focused on is that they are YOURS. They are your kid.” – My superintendent speaking directly to our public school teachers

My journey may look different than your’s. My story may have different elements. But the truth is: pain, loss, and life’s struggles, are universal. It just varies in shape and form.

But suffering is optional. – Mark Twain

Whenever possible, choose joy.

In the midst of this crazy journey, We somehow are managing to raise a beautiful, smart, kind and funny boy. We have wonderful memories. And where the was pain, there was often even more love.

My prayer is that wherever you are in your life’s journey; you find joy, peace and hope. That you may have a tribe of family or friends who will get down in the muck of life and pull you up. And if you need that, I’m here. Tell me your story.

When we listen to stories, there is no room for stereotypes…. This is a Kingdom way to live, because instead of labels and categories, we begin to dwell in actual humanity. – Shauna Niequist in Savor

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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