27 God created man in His own image, in the image of God He created him; male and female He created them.
Constantly aware. Ever vigilant. Exits secured. Dodging bullets (nerf bullets, toy trucks, sippy cups, shoes, metal toy cars, anything that can be used to target a person or glass screen, window or door). No bunker to run to for safety. No place to retreat to escape the torment. Physically or emotionally. The only place to retreat is Jesus, crying out for shelter and rest as tears tumble down your cheeks. Mentally trying to figure out your next battle plan, strategy to calm the attacks. Weeping because you are exhausted of this every single day. Thankful that 28 days ago, there was a truce of sorts. No battles, no lashing out, no rage at all. A day of peace with quiet, but sad because that was a day he wasn’t feeling good and just wanted to be held and cuddled. Wouldn’t let you let go, because he feels most secure when he’s close and held tight.
Sounds and noises we cannot hear, whether we have tuned them out because we have the ability to filter out noise or because we aren’t gifted to hear such quiet noises he can hear. The moment the gas furnace comes on before we can hear it before we can feel the hot air coming through the floor vents, he rushes over and is fearful, asking “what’s that noise?” but I hear nothing out of the norm. A few seconds later, I hear it chug to life and feel the heat. I assure him it’s nothing to be afraid of, it’s just the furnace (in the basement far from where he hears it).
Investigator of all. The coffee pot full of HOT coffee. The toolbox with sharp tools, that can’t be locked. The dryer that is big enough to climb inside. The vacuum that might need a new belt or part. The stovetop where he can cook his play food. The step stool he tries to stand on to reach something that has been put up high, out of his reach. The tablet or smartphone that he probably knows how to operate better than us. There is never a time we can let him out of our line of vision. Because no matter how many times we say, STOP or DANGER he will still reach for them or climb on it.
Constantly moving, sits for YouTube videos and when he is in his car seat with a locked chest clip and buckle guard, so he can’t escape while the vehicle is moving or in his specialty stroller with a built-in torso vest and extra fasteners. Activities that once held his attention painting, playdough, putting puzzles together, coloring, matching sequences, matching objects in a memory game, no longer appeal to him.
Body slams into people and walls, gates and furniture. Climbing and jumping off of anything he can. Sliding down the stairs on his stomach face or feet first. The faster and harder the surface the better. Hitting and punching, pulling your hair, grabbing your eyeglasses off your face, biting, throwing his body on the floor, banging his head. All the while, trying to stop him from doing things to hurt himself or you. Holding him tight, hugging him, playing music, counting out loud, letting him swing, offering his trampoline, suggesting he spins himself around or jumps up and down. Let’s make a tent so you can hide in the darkness.
Houdini wanna-be. Made it past adult the other day, out the back door wearing a pull-up only. No clothing/coat or shoes. Hates clothing. It was 34 degrees. He didn’t get far this time, I was in the driveway. Doors are secured with locks at the top, every single door in the home, but where there’s a will, he always seems to find a way.
Sleep is either totally out or restless. There is no in between. If he goes to sleep too early in the evening (9pm), he’s full-on awake by 1 a.m. If he waits to go to sleep later in the evening, he’s too tired to function in the morning hours. Night terrors since birth. Some doctors say he will outgrow them. Cannot sleep alone due to health conditions. He co-sleeps with his mommy or me, so at least every other night, we can get some rest. Sleep only comes with the help of prescribed medication, otherwise sleep is like that of a newborn baby, constantly up and down all night.
Psalm 139:13-14 New Living Translation (NLT) 13 You made all the delicate, inner parts of my body and knit me together in my mother’s womb. 14 Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it.
Many prayers prayed throughout the day. Not to make him better, but to help him. Help him figure out why he acts the way he does, how to control his moods and impulses. Show us how to love him through it all in a calm manner. Help us figure out what sets off the explosions, the sensory overloads, the meltdowns, the anger. Help us know when he is in pain, help us to soothe the noise. Help us to respond and not react. Reactions are normally based on emotions and emotions ride very high when you feel like from the minute you wake up until you lay your head down for the night you live in a battle zone. Responding in love and compassion and words that lift up are always much better, even if it takes him a while to process it.
His brain is wired differently than ours. He sees the world differently. That’s okay. We need to learn how to teach in a way that he learns. In a way that he hears. Our expectations can’t be set so high that we set him up to fail before we even start. And we also can’t see our parenting skills as a failure. We know we are doing the best we can. He has one parent and two grandparents that care for him daily. That battle with him daily. That on occasion, we laugh and giggle with him daily.
We miss our happy-go-lucky boy. We miss the one that used to love to build block towers, play with toy cars on his toy race track, blow bubbles. We miss sitting and watching Paw Patrol and Blaze and the Stuart Little Movies over and over and over again.
We miss the child that used to love all types of food, raw vegetables, cooked ones, all types of meats, dairy products, foods that fueled our bodies. Now his main staples are chicken nuggets, chips, cookies, and juice. Occasionally a yogurt sneaks in. And cold cereal. We miss the child that used to drink his liquids the right way and now we must watch him drink and make him swallow it or he will spit it out on himself, you or the floor, table, wherever he can.
We miss the child that didn’t seem angry and upset all the time. We know he is still in there because we see glimpses of him.
We miss the days when he didn’t have to take medication unless he had a fever or an infection of some sort. Now he takes medications to prevent seizures from happening on a regular basis. Medication to help him fall asleep and stay asleep. Medication to help him focus and not be so aggressive. And I often wonder with all the medication he is taking, the constipation it causes him to have isn’t a source of the battles. We will find out more at the end of February when he goes to see a GI specialist.
When we are in public, we pray he will have a good time. No throwing himself on the floor. No knocking merchandise off the shelves. No meltdowns. But when he sees his developmental doctor, although we don’t want him to have problems, it would be nice if just once they could visualize the outbursts of aggression so they could understand it’s not just him having a bad day. All of us have bad days from time to time. Days we want to stay in bed, pull the covers over our heads and skip participating in life that day.
BUT, even with all of this, we are very grateful for how far he has come. Two 1/2 years ago there were no words. No way for him to communicate with us at all. And during this time he has had to endure extensive speech therapy every week. In-home therapies.
Soon, he will be starting ABA services. In hopes that they can reach him and help him and help us to live a little bit more of a peaceful existence.
We will continue to fight the battles and strategize the best way to live our lives with this amazing little boy. He is truly a blessing in our lives. We would never want to imagine him not with us, no matter how hard it can be.
Having a child with special needs requires a lot of perseverance and a whole lot of patience and never-ending unconditional love. And a grandma like me, that isn’t afraid to pray over him daily that Jesus will help him to understand the world around him and that the world will understand and love him just as much as we do.
In four days, his back to school will resume. The winter break has been brutal. His routines thrown out the window. And it will take him a couple of weeks to get back into that routine. Most families cherish winter and spring breaks, a time to refresh and rejuvenate and all I have been praying for is when the day comes to put him back on the bus and sit down with my feet up for a couple of hours and just rest in the peace and quiet.
So, the next time you hear someone say that being a special needs parent is much the same as being a combat soldier, their not downplaying the role of a soldier in combat, but relating the stress levels are just as high. If you know of a family that has special needs individuals, ask if you can help. If you are a special needs family, don’t be afraid to ask for help and support.
Love one another, through the good, the bad and the ugly. Show grace when you feel like you’ve failed. You are doing the best you can. Seek the Lord and His guidance. PUSH-pray until something happens.
Mark 9:22-24 New Living Translation (NLT) 22 The spirit often throws him into the fire or into the water, trying to kill him. Have mercy on us and help us, if you can.”23 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”24 The father instantly cried out, “I do believe, but help me overcome my unbelief!”
Tomorrow is a new day. A clean slate. I cling to Hope.
Jesus loves you more than you will ever know! Jesus can turn any mess into a message and any test into a testimony. #HopeAlways#HaveFaith
Psalm 143:6-8 New International Version (NIV) 6 I spread out my hands to you; I thirst for you like a parched land.[a]
7 Answer me quickly, Lord; my spirit fails. Do not hide your face from me or I will be like those who go down to the pit. 8 Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to You, I entrust my life.
I am a strong person. I am told that all the time by my friends and family; even people I just met and have yet to form good relationships with. But what no one seems to realize is that I am strong, only because I allow Jesus to be my strength. My strength fails in comparison to that of Jesus.
I believe that all of us have an inner strength we are gifted through the Holy Spirit and it takes patience and requires a trust to tap into that inner strength. It doesn’t come unless it is put to the test. I know God will give me everything I need to succeed in every task I am given. I know He will not set me up to fail. He is good. All the time.
Just as we can become physically exhausted and need rest and rejuvenation, I know my spirit can become emotionally and mentally exhausted and I also need to take time to rest and rejuvenate. That type of rest and rejuvenation is different for everyone. And I also know, for me personally, if I do not take the necessary time to rest and rejuvenate my spirit, I feel as if I am drowning and my Lifeguard walks on water, how insane is that? For me to feel as if I am drowning.
I am a “people” person. I am a nurturer, and if I must admit it, I want to be a “fixer” or “people pleaser”. Not in the sense that I have any skill or talent that I can fix anything because Jesus is the only one that changes the hearts and minds of people. I can only make suggestions based on my personal experience and observation. I am much like my father, who loved being around other people and never met a stranger. I guess that qualifies me as an extrovert, personality wise. Striking up conversations with people, getting to know them, gaining a personal connection makes me come alive.
Knowing all of that, this morning hit me so hard, because as our sweet grandson wanted me to listen to him, about just one more vacuum and how cool they are, I became very frustrated and a little bit annoyed. I could care less, if I hear just one more thing about vacuums, truth be told. I know I will hear about them though. He can’t get enough, ever. And I know he can’t control those thoughts. Our brains are wired so differently. I only wanted to go back to bed and shut the world out for the day. Rest, listen to music and some podcasts, fuel up.
Taking time for myself, shouldn’t make me feel guilty or ashamed that I want some quiet. Some peace. And I shouldn’t have to feel bad if I don’t want to hear about it anymore. The guilt in my heart is from the world. Not God. It’s from the fixer in me, that says, “suck it up” you can make it through today, and tomorrow and the next day.
I wonder why we feel so guilty when we want to spend time with ourselves, no agenda or plan, just be. In the Word, God tells us to “be still and know that I am God”. Being still seems so unnatural now. I used to love being still and days like today I miss those moments. Explaining that to anyone, usually brings a response of “what’s wrong?” And I want to know why does anything have to be wrong? Some days, everyone needs time to themselves, without having to leave the comfort and haven of their own home.
I feel guilty when I think of just me and my needs. How crazy is that? I know it is a very necessary need. I shouldn’t feel guilty, but I feel like I am letting people down if I am not doing everything considered necessary to keep life on an even keel, but I realized today that if I do not take the time for me, the ship will sink and we will all drown.
No one can be an effective teacher or role model in life if they don’t take time to just be.
So, as hard as it is for me, the person that likes to fix things, today I have to take time for me. Drowning, quitting, giving up these are not options. Resting should be the easiest task I have to do, but it’s so foreign to me, I am not sure what resting even looks like. I guess I will have to keep working on the resting part.
Matthew 11:28 New International Version (NIV) 28 “Come to me, all you who are weary and burdened, and I will give you rest.
Lord Jesus, here I am. You know how weary I am right now. I claim rest in your name and praise you for being the Savior I need. Everyday. Thank you for taking my burdens and bearing them on the cross. Thank you for giving me life. Please help me find the balance I need to not feel so worn. In Jesus name, Amen.
May you know how much Jesus Loves You! Right where you are at this moment in time.
He is always here for you, always! #HopeAlwaysHaveFaith