Talking about Special Needs with Younger Children

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Kids are some of the most observant creatures on earth. Younger kids especially don’t know what it means to filter their thoughts and feelings!

Recently a friend asked me “If my son recognizes that a child is different from him, as a special needs mom, how would you want that handled?”

(Did I mention I have the sweetest friends, what a gentle and honest way to ask me something really hard!)

Honesty is always the best policy. However, at 3, 4 and 5 a long explanation of development would go in one ear and out the other.

So we have to ask: How do I want my child to relate to people? What understanding of people different from themselves do I want my child to have?

I wrestle with these questions with my own children. When my 7 year old and 5 year old are developmentally very similar it becomes difficult to explain to the younger one that her brother isn’t “bad” or “broken”.

What I really want my kids to understand is that we are all humans with hearts and souls. When we take away disabilities, physical and mental illnesses and just our own human oddities, we are all still people. And people are meant to be loved.

So if you have a child who is noticing his friend is different, slower, delayed, lounder, quieter, remember that what you share with them teaches them about all of humanity.

My advice, remind your child that we are all learning.

Even into old age we are all learning.

At a young age this makes so much sense. Kids look at mom and dad, teachers, friends and realize there are things they do not know. As children encounter the special needs kids around them the idea that they are also learning is concrete. It also creates an avenue for your child to encourage and love that child in a new way.

Next time your child sees a special needs child remind them the child is learning and ASK them how they might be able to help. Maybe it is a simple thing like carrying a bag or opening a door. Maybe it is more involved like having the patience to play with them or help them read.

Dream about how this plays out in their adulthood. Instead of seeing those that are struggling as “less than” you are creating a positive perspective that everyone can learn AND that they can be a part of that process.

Talk to your kids about their own needs to learn. Point out when someone is helping them to grow and change. Encourage them to teach and engage their peers, special needs or not, remind them that they can help others just by being a friend.

I want to live in a world of compassionate, life long learners, don’t you?

(31 Days) A Difficult Mind: Day 31, Be Brave

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

By Darcy Demmel
By Darcy Demmel

“Relationships are priceless, and relationships are built on stories shared…CS Lewis said “Friendship is born at that moment when one man says to another “What? You too? I thought that no one but myself…” 

You don’t get to that moment of “You too?” without being vulnerable and sharing a bit of yourself with someone else. That’s how we get to know each other – we tell each other our struggles and victories. We talk about our pasts and how those pasts have shaped us and changed us into who we are today. We talk about the experiences in our lives that affect us, and we talk about the ways other people through out our lives have changed us too. We speak. These shared stories and this retelling of ourselves are the things that build relationships. A relationship deepens when the stories get longer and more intricate, and a relationship deepens when the number of stories shared between people grows. The more we are open, honest and true with each other, the more wholehearted and meaningful our friendships and relationships are.” (Speak, 132)

Be Brave.

Now what? What’s next? For me? For you? For our son? After a month of opening the window of our life to this story I am almost at a loss for words on this last day…almost.

There is so much left to say. I want to tell you about my sons amazing mind and how when we received his first report card yesterday  he had above average marks in everything. I want you to know that he worked really hard at his most recent therapy session where they spent an hour exploring the word frustration. I want you to see that as the kids get ready for Halloween today our son seems like a normal kid and he can not wait to share the evening with his siblings.

I am going to keep telling this story. I am telling this story for you and for me. It is much easier to be brave together than it is for me to be brave alone.

I’ve received notes from teachers, grandparents, pastors and strangers. Of all the encouragement and questions and stories there is one group of people my heart has been deeply opened to.

Parents. Parents, especially moms, who have difficult children. These words are for you…

Be Brave.

Adoptive mom who has taken on a Difficult Mind not by biology but by choice, Be Brave. You are doing an amazing thing. Not only have you taken in an orphan and loved them and wanted them with a deep love, you have chosen  a burden most of us run away from. Your gift and sacrifice is beautiful. Don’t give up. Don’t be discouraged. Be Brave. Continue to love until it hurts and lean in to those who love you when you need it.

Silent mom who has been struggling quietly for years, Be Brave. Do not be ashamed of the disability that your son or daughter carries with them. Remember that your child is fearfully and wonderfully created. Think not on the sadness but ponder the joy that this child has brought to your life. You are not alone in your struggle, I am honored to walk this journey with you.

Nervous mom who is on the brink of knowing more, Be Brave. If you are just starting this journey of truly understanding the Difficult Mind in your life let me encourage you, it is okay to cry, to struggle, to be angry. As you engage this new journey embrace it, live out the unique and unknown. In embracing this difficult moment you will find you are braver than you ever thought possible.

Seasoned mom who has walked this road for awhile, Be Brave. You are the living definition of courage. Every day that you choose to get out of bed and face your life is one more day of amazing love that we all get to experience. Your journey matters. Your struggles are real. Your knowledge and experience is invaluable. Thank you for doing what you do and doing it well.

I am with you, each of you. I want to have coffee with you, cry with you, hug you. I want to watch your child so you can have respite. I want to walk with you and celebrate with you.

Let these words encourage you, there is someone like me not to far from where you are. How do you find them? Be who you are. Share your story. Show your true colors. Your story matters, your life and the life of your child impacts the world.

Be Brave. You are not alone.

(31 Days) A Difficult Mind: Day 30, Lessons from Downton Abbey

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

Toss

“Harsh reality is always better than false hope.” Dr. Clarkson, Downton Abbey

Who knew a little bit of British TV could be so compelling? In a conversation with my husband about this month he told me he had no idea how I’ve written about this subject for 30 days, it feels so hopeless and sad.

The dear doctor from Downton summarizes it well. I would rather live in the harsh reality of this life than be hurt day after day by false hope. Yet, I still hope.

Lesson 1: Not all hope is false.

There are very few guarantees in this life but the few that exist give me reason to hope. My son is alive. Living, breathing, walking, talking. There is hope in life. Right now hope and eternal hope.

My hope that our son can learn isn’t false. We have seen him learn, change and grow. Sure the going is slow but there is going.

My hope that our son can love isn’t false. He wrote me a note one day that said “My favorite person is you.” Me, the person who disciplines him, gives consequences and pushes him to do hard things. I know he is capable of love because beyond all that he sees that we do those things because we love him. To see love loved out in a harsh world is to be able to embrace it and experience it and live it.

Lesson 2: Harsh reality, is harsh

I can’t ignore what is right in front of me. I can’t ignore the sadness or the violence. I can’t ignore that it is hard for me and my husband. I can’t ignore that our other kids live in a world that isn’t ideal.

These things do make me sad. They are hard to deal with and I do get exhausted.

Just because I am willing to accept my harsh reality doesn’t make it go away. It does give me a point of reference, a place to start and an honest lens to view the world through.

Lesson 3: We need wise voices on this journey.

Just like Dr. Clarkson was to Thomas the valet, I need wise and experienced voices in my life.

I need to hear from people who have been on this journey. I need to hear the difficult words that those closest to me have to say. I need to surround myself with wise community so that I can avoid the deluge of false hope that so easily entangles me.

 

Today, as I prepare my report for our afternoon therapy session, I am reminded of the harshness of my reality. Hope. Real hope. The promise that my son can and that even if he can’t, he has already come so far. We are a living miracle.

 

“Hope and sorrow in it all there’s rescue and there’s not.”

There’s Rescue: I have come far enough to be able to accept our harsh reality and put off false hope.

There’s Not: There are still days when I hope for a miracle cure. It is hard not to get swallowed up by false hope.

Today I am thankful for this journey. How far we have come and what lies ahead.

(31 Days) A Difficult Mind: Day 29, Anger

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

Anger

One man may be so placed that his anger sheds the blood of thousands, and another so placed that however angry he gets he will only be laughed at. But the little mark on the soul may be much the same in both. Each has done something to himself which, unless he repents, will make it harder for him to keep out of the rage next time he is tempted, and will make the rage worse when he does fall into it. Each of them, if he seriously turns to God, can have that twist in the central man straightened out again: each is, in the long run, doomed if he will not. The bigness or smallness of the thing, seen from the outside, is not what really matters.

~CS Lewis, Mere Christianity

 

For a kid that can’t manage his emotions very well I sure have spent a lot of time talking about them this month. Loneliness, sadness, anxiety, grief, joy, selfishness.

But not Anger. We don’t talk about anger, it is impolite and inappropriate conversation. Instead we pretend like anger doesn’t really happen and we go about our business hiding it behind our beautifully decorated front doors.

Let me help, my name is Rachael and I get angry.

Anger is what happens when we feel threatened. When someone or something has crossed our stated or assumed personal boundaries without our permission, we feel angry.

Our response to anger is what matters. As Lewis indicates people either chose to retaliate through violence OR stuff it down and people judge them as foolish.

As adults many of us have learned how to appropriately deal with anger. We exercise or journal or pray. We confront our anger and work through our belief of right and wrong. We are motivated by our anger to find solutions, clarify our boundaries and even seek forgiveness. We leave most experiences of anger more committed to who we are and what we believe.

The Difficult Mind in my life does not understand anger. Anger means retaliation. In my sons mind “I’m angry” equals “I have to fight for my own justice.”

So why doesn’t the Difficult Mind understand anger? Look at our definition of anger. Anger happens when we feel threatened. The Difficult Mind has an extremely limited emotional vocabulary. The Difficult Mind does not have the words or social skills to be able to create and explain their personal boundaries to people. They can not actually tell you what does and doesn’t make them feel threatened.

Look at it another way. The Difficult Mind does not know what makes them angry, they can not connect how they feel to the environment around them.

Case and point: My daughter and son are playing Legos, she lines up three Lego figures and my son explodes.

Son: “I HATE PLAYING LEGOS WITH YOU”, throws his Legos and stomps off.

Mom: I calmly follow him and ask “What did your sister do to make you angry?”

Son: NOTHING. I just don’t like playing with her.

Mom: Did she take something you wanted or needed?

Son: No.

Mom: Did she say something that made you mad?

Son: No. She was just humming.

Mom: Why did you scream, throw your Legos and leave?

Son (through tears): I just don’t like being around my sisters. They always want to play royalty and I don’t want to play royalty. I always have to do what they want to do.

The anger and following retaliation really had nothing to do with the Legos. My son was probably having an okay time playing Legos. What was making him angry wasn’t even his sisters humming. His anger was born out of a desire to play something he wanted to play an hour earlier. By letting his initial frustration go undefined as anger, it grew and grew until it exploded.

The issue is even deeper than not getting his way. The real anger issue is that he doesn’t feel valued. He doesn’t feel like anyone wants him. He feels both alone and discarded simultaneously, yet he lacks the social knowledge and emotional language to deal with those moments as they happen.

Practically what does this mean?

We deal with a lot of retaliation. This comes in the form of violence, yelling and refusal.

We work on giving our son the language to express his anger. This is partly what therapy helps us with, developing a vocabulary of emotional language.

We struggle with consequences. Anger and then retaliation become a coping mechanism not just an act of defiance. When anger is seen as a coping mechanism consequences become harder to engage and carry through. We don’t want him to stop coping, we just want to see him be able to do it in a healthy way.

We abide in a world that requires patience, self control and most of all love. Our actions speak louder than our words. If no vocabulary exists for communication our actions are all we have left.

I chose to quote Lewis because it reminds me of what happens when we don’t engage our anger in the right way. When we chose retaliation or denial instead of reconciliation and love, anger does more than create external problems, it darkens our internal soul.

Celebrate the healthy path of anger today. Appreciate that you have a language and social understanding of anger. Commit to reconciliation and love. And if you think about it, pray for our son, his road with anger continues to be long and dark, yet we hope that love will ultimately shine through.

 

 

“Hope and sorrow in it all there’s rescue and there’s not.”

There’s Rescue: We have gone from living in unexplained violence to growing an emotional vocabulary with each other. It seems like such a small thing but with each new understood emotion, love shines a little more.

There’s Not: We are far from managing the retaliation that we face every day. It can be discouraging.

Today I am thankful for the ability to understand and work through anger. I am grateful to be loved in such a way that I am able to grow through anger and not be swallowed by darkness.

 

 

(31 Days) A Difficult Mind: Day 28, Two Faced Confession

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

Hands

Confession: I lead a double life.

There are two distinct sides of my story. On one side is the hours my son and I spend together and on the other side is the time he and I aren’t together.

I love my son. This has to be understood. When I talk about my double life it can feel like I don’t love my son or I wished he was different. Neither of those things are true. While I would never want him to struggle with a Difficult mind, I don’t love him less or think of him as less of a person because he does. I love him deeply.

One of the struggles I face is feeling that I have two lives. It takes a special skill set to parent my son well. When he is around I have those tools front and center, ready to engage. Then he goes to school or church or I may go with a friend or attend a community activity and then, I don’t need those tools, so I put them away for awhile.

Think about hiking. You could hike in a local park and exert minimal effort OR you could hike Mount Everest and be risking your life. Both are hiking, one just takes more effort than the other. This is how I feel about my role as a parent, I am always parenting but one part of my parenting journey takes a lot more effort than the other.

When my son is at school or elsewhere we have a regular, good paced flow. We can come and go as needed, easily have people in and out and just be.

When my son is with me all that changes. We have to have a rigid routine, our flow is more like marching than gentle walking and every single change and outcome needs to be planned and discussed.

Rigidity is exhausting, it requires a lot of effort.

Mental Effort: Constant planning ahead is required. If A then B is an equation I constantly have to weigh out. I am always asking the question “Will it be worth the effort?” Since there are no guarantees and few predictable patterns, by the time the end of the day comes, my brain is exhausted.

Emotional Effort: Emotions are something my son does not process well. If I over react or under react it could change the whole day. The amount of self control it takes to exert almost no emotion is beyond tiring. Being the emotional constant helps our son process his own unstable emotions. Beyond tiring it can also be hurtful to my own heart if I don’t have time and space to process my feelings.

Physically Exhausting: Part of my sons Difficult Mind means he also has a difficult body. He is constantly on the go. Since he doesn’t self regulate very well this means he needs either to be engaged with someone or engaged with something. I’m thankful that he can read because this gives me a break, but when he isn’t reading, he wants to be “with” someone, doing “something”. While I love doing things with my kids, this takes engaging our kids to a whole new level, sitting can become a luxury!

So what’s the point? Life is tiring and????

The point is this, we don’t always get to be the person we want to be. One of the sacrifices I make for my son is being who he NEEDS me to be. This means I give up a little part of who I am every single day.

Living this double life means that I have grown compassionate to the plight of others. Instead of saying “if you don’t like it, change it” I now ask “is there anything you can change and if not, what can I do to make this hard thing better”.

We don’t always have the option of another path but we can always choose to find joy in the one we have.

 

“Hope and sorrow in it all there’s rescue and there’s not.”

There’s Rescue: I have learned about parts of my heart and soul that I would have never explored had it not been for the way my son needs to be parented.

There’s Not: To parent my son takes so much effort, it is exhausting and it is not the way I want to function all the time.

Today I find joy in personality. I love that we are able to make choices about who we are and how we engage with one another. It is a life saving and life giving part of our humanity.

(31Days) A Difficult Mind: Day 27, Give It Away

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

 

giving

Dance on Monday, CSA Pick up on Tuesday, Church on Wednesday, Therapy on Thursday and Family Movie Night on Friday. Add in things like groceries, laundry and cooking and the schedule seems full.

It seems, especially where we live, people easily exist within their own four walls without many other connections. Managing a Difficult Mind just adds to this tendency. When leaving the house is always a challenge, why even try?

This is where I think a lot of us get it wrong, myself included. We look at our own lives and own burdens and think “well, my life is really hard, I just can’t give back.” Nonsense, sort of.

Let me be clear, there are seasons where giving back is not an option. The more high needs the child, the less there is to give away. For some, raising a high needs child is your life’s greatest calling. You know what you can and can’t do!

Let me be honest, a lot of us could do more and we just choose not to. We could bake a loaf of bread for a bake sale, we could write thank you notes to our children’s teachers, we could drop a cup of coffee off to that mom who is struggling like we are.

Giving is grows us and it grows our child with the Difficult Mind.

For the parent who is giving:

We are reminded of others. Their lives, their stories, their needs.

We are breaking routine, in a good way! Most Difficult Minds require a schedule and as the person guiding that process, it becomes tiring. Doing something for someone else is a break in routine and that is a good thing!

We learn who we are. When we give we learn how much we can and can’t do. We learn our own abilities and our own limitations. We learn to say “yes, I can do that this week” and “no, I have to take care of myself and my child this week”. In learning who we are we also begin to embrace our own story.

For the Difficult Mind who gives:

The Difficult Mind is reminded of others. This is a skill that does not come naturally to them. They may even complain about serving others. We all need to challenge our comfort zones, giving to others, even in the simplest ways, does this for them.

The Difficult Mind is interacting with a different routine, in a good way! We have to plan ahead to include my son in giving and serving. We have to spend time talking about it, going over the details, helping him feel safe and preparing for various outcomes. This is good for the Difficult Mind. If we hope for him to be an intricate part of his community we have to give him a community to be a part of. Giving is a great place to start.

The Difficult Mind learns who he is. Our son is exploring his strengths and weaknesses as he gives. He is learning his likes and dislikes. He is learning how to say “no” when he just can’t handle it and how to say “yes” without being a bully. He is creating his own story.

Giving is one of the hardest things for both the Parent and Difficult Mind to engage in. The parent is already tired and worn down, the Difficult Mind is already being challenged and stretched. It feels impossible.

My story reminds me that we were made for each other. In putting giving and serving at the bottom of our list we are cutting ourselves and our children off from potential community.  Most, if not all, of my community and support has stemmed from a place where I gave.

This giving, it doesn’t have to be extraordinary. Write a thank you note, watch a friends child for a short time, send plates and napkins to school for the next holiday party. The small things can make a huge difference, for you and someone else!

Remember grace. If you are in a season where your plate is full, let someone give to you. Let them bring you a meal or watch your child or say encouraging words over you.

Remember grace. When you are in a more manageable season, give back. That is how grace works. Grace is a gift from a full heart given to the person around you with an empty one.

 

 

“Hope and sorrow in it all there’s rescue and there’s not.”

There’s Rescue: There are seasons for both myself and my son that I am able to give. To give of my time and energies is something I really enjoy and I am a different person when I am able to do it.

There’s Not: There are seasons when giving is more than I can handle, we are in one of those seasons right now. Life is very rough at the moment. In not giving as much as I wish I could I fight feelings of guilt, sadness and frustration.

Today I am thankful for small gifts and small giving.

 

Linking up with Unforced Rhythms today…

(31 Days) A Difficult Mind: Day 26, For When It Feels Hopeless

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

Homework Cut

Let’s just get really real. There are days, despite my best efforts and most earnest reflection, that I still feel hopeless.

This is the part where we don’t get rescued. This is the part where our small corner of suffering reminds us of greater suffering in the world. This is the part where the hole in our heart feels like it will swallow us up but it doesn’t.

These days. The ones where I’ve lost track of the number of meltdowns before we ever walk out the door. The ones where my son has spent endless hours alone in his room refusing to eat or communicate. The ones where I wonder if I really am cut out for this journey of parenting a difficult mind.

This wandering and exhaustion feels like a desert. Yet it is in the desert where beautiful oases exist. It was in the desert that Jesus met Evil and won. It was the desert that signifies deliverance for Israel with freedom just ahead.

There are hopeless days. They are real. It is what I do with my hopeless days that determines what happens next for me and for my son.

So this time, in this pain, I need others to hope for me…

I say yes to encouragement and prayer. I actually reached out and said “This is hard, please carry me.”

I call for back up. My mom whisks in and for 3ish hours she puts my son to work in her yard and I take a nap. I restore.

I say yes to a friend and her kids when they ask for a visit. There is nothing quite as hopeful as the laughter of children and sweet conversation of a dear friend.

I let someone else play a role. I say yes to extra hands so I can throw in the laundry, run to the store and have a few moments of quiet alone. This means I let someone else be me for a bit, one of the hardest thing for a full time mama to do, but precious in ways I can’t explain.

Hopeless days happen. That is reality. In those moments I am reminded that there is always something to hope for. Restoration, healing, peace. These things have been promised to us and they will come.

In the midst of feeling hopeless we have to relent, admit our humanity and agree to be carried and then, hen we are strong again,  it will be us doing the carrying.

 

“Hope and sorrow in it all there’s rescue and there’s not.”

There’s Rescue: Not every day is hopeless. There is an eternal Rock called Hope that always remains.

There’s Not: The hopeless places are hard. It’s difficult not to go there when things get hard.

Today I am thankful for hope and those that hope and help on my behalf.