Tag Archives: special needs

Rules for the caregiver…

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Being a caregiver is not an easy job.  It means putting someone else’s needs before your own.  It means becoming selfless.

Paul wrote in Philippians 2:4, “Let each of you look not only to his own interests, but also to the interests of others.”

I was a caregiver for 15 1/2 years with my son, Clay.  I remember (far too many times) doing things robotically, failing to really see him.  Hurrying to finish one task so I could finish more.  Sigh….

So, I’ve come up with some guidelines to be sure we are ‘looking to the interests of others’ and not just checking off a box on our To Do List.

1.  SHOW UP – Really be there. Are you listening to your child?  Start your day fresh.  Begin with prayer and ask the Holy Spirit to show you their needs.  Are you rushing through your duties?  Pay attention to what you are doing and drop your phone, in fact, drop everything.  Put your needs aside and remember you are on their schedule, not yours.  Watch their body language.  You, as their mother and caretaker, know them better than anyone.  You could possibly be their only mode of communication with others so you need to be ready to voice their concerns.  If you are texting, or checking what someone had for lunch on Instagram, you are going to miss a special time with your child.

2.  CHECK YOUR MIRRORS – I’m sure you’ve noticed on your car door mirrors the sign that reads, “Objects are closer than they appear”.  Let’s go with that for a minute.  Have you checked your mirrors?  What about your face…what about your body language? What does your face say when your little one needs you in the middle of the night….again? Are you walking into their room with anger because you’re not sleeping?  Guess what?  They aren’t sleeping either.  Don’t you think that a quality night of sleep is something they want too?? For children with special needs the difficulty is compounded by their limited control over their bodies and problems with communication.  Try to empathize.  They are looking to you, their mother, their caregiver for help.  Does your face show anger?  Stop. Is that the look you would want to see when you are in pain or afraid?  Pray with your little one and remind him that Jesus loves him and will never, ever leave him.  Let him feel the sense of peace that has overtaken your mind and spirit.  The way you relate to him will influence how well he can cope with his own fears.  In Luke 12:6 Jesus says that God doesn’t forget even a single sparrow – How much more does He care for us?  Our circumstances – our child – our life has been ordained by God.  God does nothing…or allows nothing…without a purpose.

3.  CLEAN OUT YOUR CLOSET  – Get rid of anger, impatience, and other respectable or subtle sins.  Worry is a sin.  I know, it doesn’t seem like a very big sin….but sin is sin.  I also know that as a mother of a special needs child, it is very easy to worry about their future and what would happen to them if you were not around.  I get it.  But there are ways to insure your child can have the best care if you were, let’s say, unavailable… It is going to take a bit of work, but trust me.  THIS is important.

Begin with a daily schedule.  Write down every single thing you do starting with  walking into their bedroom in the morning (do you sing to him when you see him?  Are you the mom that says, “Wakey, wakey, eggs and bakey”??) Write it down!  That may be the little something that your child looks forward to each morning!  Do you open the blinds?  Write it down!  At bathtime, do you lay his clothes out on the bed or take them into the bathroom?  Does he help with his bath or brushing his teeth?  Does he like a little, tiny speck of toothpaste and  can he comb his own hair?  See?  These are little things that you do each day and probably do a bit robotically.  The point is that someone else needs to be able to walk into his room and do these things exactly as you do them.  These small things can be the difference between a good and bad day for your little one.  Keep his daily schedule in a folder to make it easy for someone to take your place in case you are sick or gone.  Yay!  One less worry!

4.  STORE UP SUPPLIES – Memorize scripture!  This is our ammunition against:

a) discouragementJohn 14:1, “Let not your heart be troubled; you believe in God, believe also in me.”

b) worry  – 1 Peter 5:7, “Casting all your care upon Him, for He cares for you.”

c) lonelinessPsalm 147:3, “He heals the brokenhearted and binds up their wounds.”

d) depression2 Corinthians 1:3-4, Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.”

Play Christian music.  Let God’s peace rule in their hearts!  There are beautiful CD’s of Scripture Lullabies that can be played throughout the day.  Where loud, chaotic music can excite and frustrate little ones, peaceful scripture music can soothe.  And you are putting God’s Word in their hearts!

Read your Bible out loud to your child.  Children love stories and Bible stories have such truth about God and how much He loves little children.  When you are filling your cup (which is almost always empty) you are filling theirs too.  Enjoy the nearness of God.

5.  TURN ON THE LIGHTS – Reflect Jesus!  Be an encourager because everyone loves praise!  Tell your special child how he has the sweetest smile and tell him why you love him so very much! Remind him that as much as you love him, Jesus loves him even more!  Read Psalm 139 and let him know he is “fearfully and wonderfully made.”

How much time does your little one spend in his room?  Open the curtains, clean up the room and make it a relaxing place to be.  Place all the little stuffed animals and bright toys where he can reach them.  Use a laundry basket on the floor so they can also be picked up easily and placed back inside.  Does your child love flowers?  Don’t wait for a special occasion.  Place colorful, happy flowers in a vase where they can be easily seen.  If you don’t have access to fresh flowers, cut them out of magazines to paste in a book or on the wall where he can see them.  The important thing is to have a clean, joyful room; a room where he feels safe, loved and protected.

6.  LIFT WEIGHTS – Get rid of anger and get rid of guilt.  As mothers, we are very prone to those guilty feelings of “its my fault”, or “if only” thoughts.  Don’t be paralyzed by your past.  It’s over.  It’s done.  Let’s move on.  Give thanks in all circumstances.  Ephesians 5:20 says, “always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.”

Guilt means you’ve done something wrong.  We all have some sort of guilt over something we did or didn’t do in our past.  That’s why we see so many people turn to alcohol, drugs or some other ‘numbing’ vice.  Our desire is to push it back and forget it somehow.

The effects of guilt are toxic.  The last thing we want to do, as mothers, is project any of our guilt onto our little ones.  Here are some examples of the effects:

  • feelings of rejection
  • projection of your feelings onto other people
  • inability to say no
  • depression
  • anxiety
  • blame shifting…etc.

Until we truly understand what Christ did for us 2000 years ago – we will never be set free!! Jesus paid the price for that sin and you don’t have to live under that condemnation!  (Read Romans 3:9-11, 24, and 27.)  Understand your wrongs and accept God’s forgiveness.  He is extending grace and mercy to you, and once you ask Him for forgiveness, in the spirit of Frozen, LET IT GO! When it comes back to mind, take it as an opportunity to thank God again for this gift of forgiveness.  Satan would love to keep throwing this back at you – but as Daughters of the King, we have His grace, His mercy and His forgiveness.  You don’t need to keep asking for forgiveness for the same sin over and over.  Have you ever been with someone that re-hashes the same old, tired story over and over?  Imagine what God is hearing when we keep bringing up our same old, tired story to Him!  One and done, people!!

When you realize the forgiveness that comes with being a Christian and accepting Him into your life, you can stand taller…..you can smile longer….and you will have a light about you that no one can put out!  THAT is what your child needs to see!!  THAT is what you want to see in your mirror each morning and that is something your family needs to see also.  When we pair our positive thoughts and ideas into our children about their importance and about God’s love and forgiveness, we will change.

Simple rules.  Undying love.

 

 

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special kids, chosen moms…

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Finally!  I have finally finished writing a book that has my blood, sweat, tears and more tears all over it.  (ok, not literally) and it is listed on Amazon HERE.

If you didn’t know, I had a beautiful child that contracted Group B Strep on his 3rd day in this world.  Within weeks we discovered he was blind, had cerebral palsy, a severe seizure disorder and was fed via a G-Tube with a 24 hour feeding pump.  This little guy took over 32 medications a day and decided to stick around for 15 1/2 years!  He was an amazing child that grew to be over 5 feet tall and certainly kept me in shape!

In my book, I am hoping to help other mothers of special needs children as they take care of their own.  It’s a practical guide with information regarding healthcare, schools and respite, organizing the household, travelling and laced with Scriptures throughout.

My own journey was made easier by allowing God to walk with me and help me make it day by day and hour by hour.  I cannot imagine this season in my life without Him to lean on.

Please take a moment to look at the book and let me know what you think.  I’m hoping that by helping mom’s of special needs children physically, that God can lift them up spiritually and lead them closer to His grace.  I want God’s peace to infiltrate your home, your life and the life of your little one.

 

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special tricks and treats …

Tonight, a lot of creatures will visit your door.  Be open minded.

The child who is grabbing more than one piece of candy might have poor fine motor skills.  The child who takes forever to pick out one piece of candy might have motor planning issues.  The child who does not say “trick or treat” or “thank you” might be painfully shy, non-verbal, or selectively mute…. If you cannot understand their words, they may struggle with developmental apraxia of speech.  The child who looks disappointed when he sees your bowl might have a life-threatening allergy.  The child who isn’t wearing a costume at all might have SPD or autism.

Know that they are thankful in their hearts and minds.

Be kind, be patient, smile, pretend you understand. It’s everyone’s Halloween.

Make a parent feel good by making a big deal of their special child.

Here’s a great tip before you venture out with your little spook: (via)

Practice trick or treating with your child ahead of time at your own door.  Take your child to the Halloween section of a store and explain that people wear all kinds of costumes.  Talk about the kinds of scary or funny costumes you might see.  If you think your child might be afraid during trick or treating, try making a game of it (e.g. Let’s see how many witches we’ll see today). This will help keep your child’s mind off the scary faces.

And a HAPPY HALLOWEEN TO ALL Y’ALL!!!!!

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i miss you baby clay…

Today is the 9th year that has passed without my sweet one!  Tomorrow is Mother’s Day and I will remember his life…and smile.

I thought of you with love today

But that is nothing new.

I thought about you yesterday,

And days before that too.

I think of you in silence,

I often speak your name.

All I have are memories

And pictures in a frame.

Your memory is my keepsake,

With which I’ll never part,

God has you in His keeping.

I have you in my heart.

~ Unknown

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orphans in Ukraine…

Oh, my friends.  This one is tough…….

I was looking at sites for special needs kids for additional resources in writing my book….

I came upon this website…

This is only for the brave….and it will change the way you pray…CAN YOU WATCH to the end?  Please…

EVERYONE deserves

to be somebody..

to Someone…

My prayer today is that we reach out to those who are in need……www.hiskidstoo.org

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