Practical Love

12 Ways to “Help” a Parent or Family Member with Special Needs Children

  

1.     Just be with them. Sit alongside them and be okay with not having any answers. Don’t be afraid to say the wrong thing if you are coming from a place of love and encouragement.  Make sure that you are not saying something to alleviate your own discomfort. Try not to be a fixer.  Just love them.

2.    Encourage health (physical, emotional, spiritual). Invite them for a run/walk/cycle class. Invite them to a bible study or do one with them. Pay for a counseling appt. or if you are a counselor, provide some free sessions.

3.    Remind them of their value. Most people regularly see the rewards of their work and/or parenting (completed projects, met deadlines, developmental growth, etc.).  Special-needs families give and care for their children or family member often with no end in sight.

4.    Bring them a meal. Find some way to get them what they need, whether it’s a healthy meal or just something delivered to their door so they can care for their child and household without the added pressure of meal prep. Ask about dietary restrictions and choose food accordingly.

5.    Take them out for an afternoon/evening to do something NORMAL!(These can be simple things like shopping, a long walk or hike, a pedicure, a pottery or art class, fun at a go kart track, anything you’d do with your other friends.) Laughter is great!

6.    Help with a date night! Put together a schedule where each family in their circle of friends can volunteer so they can have a consistent date night. Each couple could care for the special needs kids for three-to-four hours once a month or even every other month.

7.    Let them cry and grieve. Intercede and pray over them in these moments. Ask God to heal their hearts and their wounds, and to revive their weary spirits.

8.    Teach and speak to your children about ours. Make sure they treat our children with dignity and make effort to include them.  Encourage your children to participate, interact, ask questions, and deal with their own discomforts.  How can our family be friends with yours if only the adults interact with our children??

9.    Allow them [special needs families] to help YOU. Hmmm, weird right? Loving someone else while you are suffering brings great freedom.  It opens your heart and eyes to the world around you and reminds you that it’s still turning. There is often guilt or a refusal to allow someone in great need to help you.  How humbling.  It also blesses them.  We are all human beings who are made to receive love AND give love.  Families with special needs children who have endured a lot of suffering are often great teachers.  They have a perspective that most of us will never have simply because we will not experience the depth of suffering they have.

10. Be a champion and advocate for special needs families. They are often depleted and run down by the many systems, providers and people that they have to interact with (schools, teachers, hospitals, physicians, insurance companies, sometimes even their own extended families).  If you see they are being treated unfairly or being given poor care…STAND UP for them.  If you see abuse or mistreatment, then do something.

11.  Be thankful. As you listen to them, make mental notes of the things you have that they don’t and be grateful. It is often painful for special needs families to listen to people complain about the college a child didn’t get in to when they are dealing with children who can’t even write. It’s hard to hear moaning about a last place finish in sports when you have a special needs child who can’t walk or understand. Please don’t talk to special needs parents about how your child annoys you by asking too many questions, when their child may not even be able to speak.

12. If you see a need, don’t look away!  This is hard because sometimes you cannot fix it all, but you can lift SOME of the burden.  A shoulder to lean on, a utility bill paid, a gift card for groceries, a card in the mail to know they are not forgotten, spending time with their kids so special needs parents can nap, a drive to the doctor for company, a drywall repair, a room painted, a broken toilet fixed, monetary gifts for uncovered medical expenses, legal help, lawn care, coming for a visit to just keep them company…. the list goes on and on.  It is a matter of seeing or hearing the need and meeting it if you are able.  Just don’t look away.  We are often the answer to unmet needs we see in front of us.  Just do something! If you are a person who has already reached out, encourage others around you to do the same and show them how you did it.  Get involved with an organization who helps these families.  Most of all, just love the person in front of you in a tangible way.

The people who have done these things for my husband and I over the years have saved our life!  (Home cooked meals, invitations to cycle classes, a run, sprinkler blowouts, caring for our children, birthday parties and prayer meetings for our boys, thoughtfully being mindful of their needs, likes, allergies, ministering to our boys on Sundays, monetary gifts, dropping by with laundry soap, making us feel welcome and included, making a grocery store run, inviting us to events, accepting us, helping us sell our home, crying with us, praying with us, giving us a voice, allowing us coffee/lunch/ice cream dates and so important—helping us nurture our marriage by helping with our children.  These people have been the hands and feet of Jesus to us and have encouraged our own growth.  They have comforted me as well as challenged me to grow.  They were friends who refused to let me fall into a pattern of self-pity and victimization, but instead encouraged me to be the mother, wife, warrior and champion God has called me to be!

Something to remember is that these families are NOT FRAGILE! They have heavy burdens, but are people just like you and me who want to succeed at life.  We each have our own gifts, talents and place in this world.  BE BRAVE!

PAIN IS NOT CONTAGIOUS, BUT JOY IS.” -COLLEEN MAILE

A way out…

At times throughout my life as I’ve gone through difficult circumstances with an uncertain outcome, experienced a lot of anxiety, or am dealing with a current or past trauma – I have found my thoughts racing or am even bombarded with distracting plans and intrusive thoughts.  My first reaction when those come are usually “what is wrong with me?” or “am I going crazy?” Over the years, I’ve been training my mind to identify what is TRUTH.  The truth is sometimes not all that comforting if I’m honest, especially the truth about myself. I’ve learned that these thoughts and distractions are my mind and heart’s way of trying to run.  God has His persistent plan for me though.

Our proud human nature likes to think we should be somewhere different than we are, that we shouldn’t be battling these same issues still, that we should be more put together, or the worst one…at least I’m not as bad as _____.  FYI…in the right circumstances, you could be.  The “shoulds” are an entirely other issue that we can go into another day, but let me at least say there is no end to them.  The “should” will pin you down and take all your air in the form of hope.  We give ourselves WAY too much credit and power.  When we think we can either lift up our world or take it down singlehandedly, we have the thought that the God of the universe is smaller than us.  It’s not TRUTH.  Thankfully, He is not affected (or angry) by our warped ideas.  His purpose will still go on.

However, the damage done to our own minds is self inflicted and solidifies over time the more we dwell on UNTRUTH.  Kind of like when you eat terrible, smoke, and don’t exercise for years.  Early on, you could likely stop all negative outcomes by just changing those things, but as time goes on, those things begin to have an effect on your body and cause damage.  It’s the same thing.

Pain is…well…PAINFUL! Our natural instinct is to run from it or fight against it.  What I do know, and can tell you has remained a constant in my life –  is that when I stand and look the pain in the face and receive the struggle as part of this journey that God has me on…then I grow by leaps and bounds.  I also have peace.  When we run from it by latching onto distractions in the form of crazy thoughts we obsess on, bad relationships we keep going back to, media we search to find meaningless purpose or love, even the good things (exercise, our children, our spouse) that we use to avoid facing ourselves or what God wants to grow in us.  I have had to face the fragility of my little boy’s life, but for many years I didn’t.  It kept popping up in weird ways letting me know that “reality” wasn’t going anywhere.

What TRUTH have you been running from or fighting lately?

We always assume TRUTH is something that will be revealed about someone else, then we will be justified in our pain, have tools, and everything will be better. Then we will have more ways to control life and avoid the pain.  Yep, it’s all still “running”. Worry is a way of running.  We even fret when we can’t control the circumstances, so we mull them over in our mind until we are heart sick.  Who does that benefit?  No one.

NEWS FLASH!!! TRUTH is often the unfolding reality about ourselves, how we cope, mistakes we’ve made, how we interact, forgiveness we need to seek out, the things we believe about people and mostly about God.  When we embrace the truth and allow it to change us, then we will be healthy and grow.  We will experience peace and contentment.  The quicker you stop lying to yourself about yourself and realize that God doesn’t want to beat you over the head with it either, the quicker you’ll likely get out of the trial or the lifelong rut or bout of apathy you’ve been in.  There’s a reason you don’t feel anything anymore.  Allow this, and the truth about yourself and God’s love and purpose for you, to AWAKEN you.

This weekend in a sermon, my pastor was speaking about “where our treasure is…that is where our heart is also.”  In the battle to find love (knowing that we are truly loved) we chase after so many things.  He said “seek God to your heart’s content”.  I was so thrilled at how I understood that.  For one, I did.  Secondly, that meant that when my heart is discontent, hurting, despairing, questioning, rejected…then I can seek God TO MY HEART’S CONTENT.  Since I am a determined person, I saw the total TRUTH in that.  That meant that if I wasn’t content, I could keep seeking persistently.  Eventually, Jesus will envelop me with His love and will give me all that my heart needs in those moments.

Truth is accepting reality.  We are often avoiding reality because it’s painful. When we do that though, we create our own weird world (like when we think of the worst possible outcome to our circumstances or assume other people’s motives).  I thought I’d share ways that God has given me courage and the grace to exist in my circumstances with a mind that is fixed in truth and reality.  I’m no expert and I’m one in a billion voices these days, but I wanted to encourage people to “be strong and courageous…”, so they can experience all that God has for them and no longer allow the thief steal from them.

Reality is grieving.  It is accepting loss.  The only way to get out of grief is to walk through it.  It’s accepting that things aren’t the way you thought they’d be or dreamed they’d be.  Maybe your hands are tied.  There is purpose on THIS path though.  You may not know all the why’s or like what has happened, but you will see the purpose of it unfolding if you embrace it. The purpose often reaches farther than us and is even intended for someone else at times.

Reality is accepting your circumstances with the right attitude.  This does not mean you won’t struggle.  The aim though, should always be purpose and joy.  Joy is not always happiness. Dwell on God’s great love for you, His love for your family, and search for things to be thankful for.  Are you breathing…then there is purpose for you today.

Reality is listening to the hard things about ourselves.  Sometimes we have caused others pain (intentional or not).  It’s important and healthy to listen to how we’ve injured another person without defending ourselves if they are valid.  It’s usually obvious deep down to us when we’ve made mistake. This is part of being healthy.

Reality is being honest.  In the same way that we need people to be honest with us so that we can see ourselves accurately, we need to be honest with others.  Mostly it comes in times when people tend to manipulate, lie, or side track us from our mission that we need to be really direct.  Maybe we see someone in patterns of harm.  “Love rejoices in the truth”.  We need to be truthful with them which may feel like a conflict.  Conflict in itself is not bad, when coming into it with unity as the end game.

Reality is accepting the hard things about ourselves.  Maybe you’re a complainer, maybe you don’t forgive well or are bitter, maybe you shut people out and assume the worst about people, maybe you’ve been a coward, maybe you’ve thrown people you love under the bus because something better came a long, maybe you appease people because you are too afraid of conflict, maybe you flatter people or are fake, maybe you are critical and judgmental, maybe you’re stubborn and don’t yield when necessary, maybe you’re impatient, maybe you aren’t gracious and compassionate, maybe you are greedy with your time and love, maybe you are selfish, focused on things rather than people, maybe you don’t care and are unapologetic about yourself (yikes), whatever you’re thing is…I’m sure you already know what it is.  Multiple people have probably repeated it to you.

Reality is changing the hard things about ourselves. It’s doing the hard work once we’ve seen the mess.  Haha! Sometimes when I’m cleaning and I move my son’s bed and I see piles of dog hair and dust.  My first instinct is to cover it back up and try to forget I saw it, however because I’m a “work now, play later” person, I can’t let it go.  There are the weeds in the yard that are small now, but will grow and consume everything.  For me, doing the hard work and getting it over with, means I can have sweet peace and unhindered relaxation later.  IT’S THE SAME THING.  When you see the mess, BE BRAVE!  Have courage to do the hard thing.  God does not require you to do this alone.  In fact, the Bible says that “HE who has begun a good work in you, is faithful to complete it.”  Philippians 1:6   He starts things and He finishes things.  He is not like us and thinks “what did I get myself into” and then cuts His losses.  You are valuable and deeply loved, loved so much He wants you at your potential.

Reality is accepting the truth that we’ve been rejected by someone we love (a family member, friend, spouse). They may not accept us, our personalities don’t mesh, they speak badly about us, they may have violated our trust, betrayed us, they may be critical and try to defeat your goals, etc.  Their actions have said “they don’t want us.”  Ouch!  Once we accept that, and let go of what WANT that relationship to look like (grieve) and see it for what it is…freedom.  Love is free and does not force through punishment or manipulation.  We can come to the acceptance that we are not in control and we lack the love we need, but then go to the only dependable SOURCE.  We can control our attitude, to some extent – our environment, and we will likely not want to react from a broken place of desperation anymore.  We will experience the freedom of letting go.  Don’t follow someone who’s walked away and don’t grovel.  We need to be kind and respectful, but ALWAYS REAL. To bury things is to live in a delusional relationship.  If a relationship is difficult there is often a natural consequence of distance.  People don’t want to be close to someone they don’t feel safe with.

Reality is owning your life and giving up on blaming others.  One of the hardest truths to accept without falling into despair is realizing that you may be the main one responsible for where you are at in life.  You may have fallen a long way down or might not even know how long you’ve been there.  At some point, we come to a place when we realize the choices we have made aren’t someone else’s fault (our parents, our spouse, our children).  When we realize the way we are living or acting is unhealthy, blaming other is a brick wall.  They may have created the mess, but unfortunately, it’s yours to clean up.  I honestly hate this one too.  You can’t force others to see their mistakes or sins against you, you can’t make them change, but you can sever the distraction that blaming them creates.  You will stay stuck if you keep blaming.  Ever noticed in an argument, until someone apologizes or admits their fault…then the wheel just keeps spinning?  When you apologize or ask for forgiveness, DO NOT follow it up with anything but a period.  When you own your life it ends and starts with you.

I have two children with significant special needs. God has given me so much purpose in being their Mama!  They both have significant medical and developmental issues, but completely different diagnosis.  In the past 2 years, many devastating things have happened to them, to our family.

As much as I squirm, I find that I just make it more painful.  The more I try to light my own way or push for ways to stop the pain, the more I actually hurt myself.  In this storm, He has not stopped the thunder and the waves…but He has calmed them all inside me.  The more I press into Jesus and bury myself in His love for me even when I can’t see His plan…I experience ABUNDANT LIFE. Abundant life is not what we think.  It is experiencing God’s love for us and sharing it with any others who long for it. It’s not always a cure from a disease, the debt being paid off, the relationship reconciled.  It is not always the happy ending…it’s seeking God when all is lost and when all is found.  The abundant life is being freed from yourself and saved by Love! So much freedom comes when we take our eyes off of our pain and serve someone else.  It’s designed that way. 

Bravery

Isn’t it funny how the things that are the most difficult for us are often the things that Jesus leads us to face. He is relentless in His pursuit of us and our hearts. He is also relentless in His desire for us to be COURAGEOUS. That’s what I am going to be meditating on and asking God to show me… where I can be more courageous. I haven’t been in the Word much lately and this morning as I opened it and read the beginning of Joshua I realized that the Lord stated to “be courageous” or to “have courage” 4 times in one chapter!!! That obviously means that following God will require us to be brave, to face our fears, to look into the face of danger and sometimes suffering and move through it, safely reaching the other side.

Often times in my past and now, my mind and heart reject this opportunity by obsessing or focusing on delusional things that “could” happen, but haven’t and on difficulties in relationships that are “presumed” but aren’t actually proven. These things have served as a distraction from my growth and can make me ineffective, even paralyzing me at times. I can become paralyzed by fear or paralyzed by making a decision at all. FYI…failure is not final and the real tragedy or mistake is not trying at all and taking no risks. Thankfully years ago a pastor brought attention to this in my life as well as one of my mentors (who said it wasn’t uncommon for her either). Basically, in the past (and sometimes now), I borrow trouble and heartache because reality is so painful. The issues may be very possible and I may be right, but the Enemy uses these things to turn up the noise and make it more difficult for me to filter what is the most important thing to listen to in the moment. It also has stopped me from fulfilling my purpose in that moment. RIGHT NOW is where life is, RIGHT NOW is where love and opportunity to grow is. RIGHT NOW is what God has called me to. We can run around, fret, and obsess about what people think and what could happen which is delusional (not based in reality) because our reality is too painful. A mentor and counselor once told me that God gives us so much grace, but He does not give grace for tomorrow or yesterday. This means that we are able, capable, and have the stability (by His Spirit) to handle today and all its battles, but when we go worrying about tomorrow and the “what ifs” or living in condemnation from the mistakes or doubt of yesterdays decisions then we fail, big time. Everything starts to fall apart because we aren’t meant to be there.

I was told by another mentor (I’ve had a few over the years because God has been such a faithful coach) recently that he liked that I was a very “real” person, real about my strengths and real about my weaknesses. He said I was a realist and don’t do well with phony and superficial things in life. He also shared with me that the more definition my soul gets eventually someone won’t like me…and that’s ok. The part where he said it’s ok, was really powerful for me. I am a reality person. I gravitate towards very authentic people, people who suffer, conversations about heart issues, I want to face problems in relationships and deal with them to experience freedom and growth, I want to face my own flaws and weakness so I don’t carry them around forever and I always want to be honest with God and others. I was told once to “absorb the suffering”. I’ve become so much less afraid of trials and difficulties, and have actually come to expect them. This is how we are made strong (in our minds, hearts, and bodies). Suffering makes us stronger. If someone would’ve told me 10 years ago what we’d be carrying or what we will have gone through, I never would have believed them.

I have been a fearful and anxious person since I can remember. I had anxiety about leaving my mom and anxiety about disasters, death, and not being loved. I thrived from security and things I could trust and hold onto (which was very rare in my life growing up). I guess that’s partially why I’m so protective and close to my kids. The more I know, the more prepared I feel. The more prepared I feel, the less caught off guard I will be. This is the dialogue I have had with myself throughout my life and it’s how I’ve tried to feel in control of situations so I won’t be hurt or so I can avoid pain. However, my life has turned into a journey of the unknown requiring more and more trust and faith in God and less and less security, except in Him and His goodness (which truly is the only real security there is). Control (and sometimes even preparation) is just an illusion. My children’s days are not in my hands. At any moment, everything can change for any of us. Our way of life, our country, our job, our identity in our titles, our health, our family – it can all change in an instant. Then, we will find out what we’re made of. The greatest hope that I have found is that God is so patient. This is amazing to me because I am so impatient. He works on us over and over, presses us, refines us, and heals us. Do we really want to refuse healing?? Do we really want to be the same person??

I am completely amazed at how far God has brought me and how much courage He continues to enable me to have. He only asks that I step forward to take His hand. He has asked me to be brave in relationships and refuse to give insecurity or unforgiveness a place. He has asked me to accept pain and injury from others and not pretend it didn’t happen, but to forgive as He has forgiven me. He has asked me to sit in large meetings filled with professionals and be a voice for my children (often times having to push back and ask for what my boys truly deserve along with advocating for their safety, dignity, and education). He has asked me to do the same in rooms full of medical professionals. He has asked me to face the reality that I will not have my youngest son for as long as I had hoped on this earth. He has asked me to look into the eyes of my other son and walk alongside him during great suffering, struggle to communicate, raging, chronic pain and illness. In in it all…teaching them both how to maneuver through this life lacking many things and avantages that others have. He has asked me to accept and face the reality of rejection by some family members and abandonment by others. He has asked me to face isolation at times as well. He has asked me to face the brokeness of my past, the ugliness of my pride, and the doubt in my heart.  He never condemns me or shames me (and if that’s what you hear, it isn’t God talking to you). He says “Come, let us reason together…”  Isaiah 1:18.  He wants to reason it through with you.  Spoiler alert: He’s always right.  Any of my ways that have been rooted in HAVING to know, impatience, trying to find and make my own way, fear, doubt, control, or even apathy have all been destructive in my life.  

The biggest thing he asks me to face is TODAY: God is calling me into deeper waters that require more bravery from me than I feel like He’s ever asked me to have. I have had a heavy heart for the past year and half that things will get harder or that a great challenge is coming. If I’m being honest, I don’t know if the Lord is preparing my heart for my little boy to go home to be with Jesus, OR the possibility that He is preparing my heart to continue on and joyfully care for both my boys with all of the new things that are coming…in faith. Both (after all we’ve been through the past year and what we have to face each day) will require tremendous bravery on my part! God is also calling me to trust Him in new ways about the future of both my boys (Matthew’s life and significant struggles as well as Luke’s struggles and new growth and independence). The reality that I’ve seen that I will be caring for my boys for the rest of my life has, at time, overwhelmed me.  I’ve always known this, but I didn’t know what things would come.  We will not always be around, and I often think of who will do what I do for them? Again, borrowing trouble! I have to do my best, but reject unreasonable fears when they come. God is also calling me to step bravely into situations where He wants to use all the gifts He has given me and all the things He has been developing in me. My identity always remains in Him. “Lord, make me brave!”

I’m so naive still to think I’m on my own. In Joshua God asked him to be courageous or brave, but ALWAYS paired with the fact that He is WITH him and will NEVER leave him, and has already given him the promised land. This doesn’t mean with, like when we think of someone just being next to us.  This means (to me at least) filled with, empowered by, comforted by, and carried by Him.  God is always working to get us to change our perspective. He has also provided His church, the Body. The hands, feet, heart, mind, and voice of God (through other believers) is here with us. I have walked through difficult times as a Christian with fellow believers, but am aware now (but still accepting sometimes) the brokenness that we all have. We all need healing, we all have flaws, we are all at different maturity levels in our walk with Jesus. We need grace towards one another and sometimes accountability. We need to push each other to grow, call each other out sometimes in love, and weep with one another when we fail, because just like Jesus is so patient with me (while also pushing to grow), so we need to be patient with each other. He’s capable and faithful to give us wisdom when we have no idea what to do and He is just as faithful to convict us and reveal to us our flaws that are hindering us and possibly harming others. Are we brave enough to face these things?? I LOVE LOVE LOVE how REAL and AUTHENTIC my God is. It doesn’t get more real than the good God of the universe giving up everything (His only Son)to chase down my wild, cowardly, selfish heart and draw me to face the reality of my sin AND turn me around and give me the best, most adventurous life, filled to the brim with love. When I see the Cross and His perfect love and justice collide, it compels me to be humble and COURAGEOUS. I hope today you will DO something brave and face the hard things so that you can become ALL that He made you to be as well as a FORCE for the Kingdom.