Four Years Already!

Romans 12:11-13 New International Version (NIV)
11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality.

Three days ago, Tyson turned 4. It amazes me how time seems to go so fast the older I get. I remember the moment he entered the world and what great joy he brought to our hearts! To hear his first cry and to hold him close and think of all the great things he would accomplish in his life, dreams you have for your grandchild; the same kinds of dreams you have for your children. Dreams they will be healthy and happy and know how much they are loved. That adversity and obstacles will not cross their path and if it does, they will be able to cope with those and continue forward.  I remember thinking how perfect he was as I held him that very first time in my arms and thanked God for this beautiful life he was entrusting to our daughter and us to nurture and love and teach. Little did I know that not only would he face many challenges near the early part of his life, but that they would also change the way I viewed the world and allow me to see pure and simple joys in so many things I had taken for granted for so many years.

At birth, he was almost 10 pounds. He didn’t look like a brand new newborn, more like the size of a 2-3 month old and most of his newborn outfits he didn’t even fit into, but that didn’t matter because he was healthy, and appeared happy and slept through the night. Yes, we had to wake him to actually get him to do his feedings. He loved being swaddled in a blanket; the tighter the better, on one condition though, his arms could not be trapped in that wrapping.  They had to be free. He still loves to be wrapped tightly in a blanket or sheet. He loves the deep pressure that he needs for his sensory needs.

Four years ago, I had no idea what terms like sensory needs or sensory seeker/avoider meant. but I do now.  And stimming, I thought that had to do with floral arrangements, not something that a child with autism does to calm themselves. And what the heck was PECS? Did that have something to do with bodybuilding??? Nope. PECS is a picture exchange communication system for people that do not speak or can’t speak clearly enough for you to know what they want or need.

When you have a special needs child, there are so many terms that seem so foreign and so overwhelming that you wonder if you will ever make sense of them. You wonder how in the world am I supposed to remember all this and how do I help him make sense of it all. But God knows what we need and he places people in our lives to help us make sense of it and get us through our journeys. No matter what our journey looks like, He always makes a way.

At 26 months, Tyson was diagnosed with Autism Spectrum Disorder, Level 2.  I had no idea there was such a thing as Levels for individuals with ASD and was level 2 a good or bad thing? Click here to read the difference in the levels and what type of supports need to be in place to help each person. There are three levels of ASD. Level 2 under the DSM5-Diagnostic Manual means he would require substantial support. He was non verbal. Made very little eye contact; and did not play appropriately with many toys. He was happy doing things on his own without interacting with others, but has always been very empathetic and loving, especially if he noticed a family member was teary eyed or not feeling well. He would hug you and pat you on the back, as if to say, it will be okay.

As the months progressed, after his diagnosis, we had many other evaluations done to determine if the reason he wasn’t verbal was because of a hearing disability or a speech impairment. His hearing was fine, so that meant either he didn’t know how to form words to speak or he didn’t have a voice, but that didn’t deter us. He has been in Speech Therapy for almost two years (in August we will hit the two year mark). And it has been amazing to see him learn how to tell us what he wants through the use of PECS, simple sign language and short to the point words. Most recently he has been putting 4-5 words together to express himself! His utterances may not be grammatically correct, but it is music to our ears!!

For him, his sensory needs are many. Some we are still navigating through and learning. He received a diagnosis of Sensory Processing Disorder in October of 2016 from an Occupational Therapist that observed him and listened to our concerns/more questionnaires to fill out and he is definitely a sensory seeker.  Seeking out ways to get the input his body needs in ways that aren’t always safe or acceptable. He will climb on anything he thinks he can, even if it is not something any neurotypical child would consider doing. He plays hard. Danger and unsafe don’t mean a thing to him. He knows that my coffee cup is hot, but doesn’t understand that if he spills it, he could get burnt. No comprehension between what hot is and how it can hurt. He loves to bang his head on the floor, into the wall, on the back of a chair and even though he cries, the tears only last for a few seconds and he will do it again. And he has always done this for as long as I can remember. He LOVES water. But water is always a danger, because he doesn’t understand that you can’t go under the water and stay there. The street to him is a big place to run and be free, and the list goes on.

As a sensory avoider, he covers his ears when there are loud noises such as a vacuum cleaner or hair dryer turned on, but he can watch videos cranked at full blast, at a spring concert for our granddaughter the singing did not bother him, but the band instruments made him bury his head, because they were too loud. Every day is an adventure, because you never know what noises will bother him and which will soothe him. And bright lights or a very sunny day and he will cover his eyes, but he doesn’t like it totally dark either.  He has learned the difference between the sun and the moon. When we can’t see the sun anymore that means the sun has gone to bed and the moon lights the night sky. When the clouds are out at night and the moon is hidden, he searches to see where it is and he doesn’t like the explanation that the moon is hiding. Sometimes this alone can cause him to have a meltdown.

Stimming for him is a way for him to release when everything becomes too much in his brain. And just as ASD is different for everyone, stimming is different for everyone too. He loves to spin in circles until he gets dizzy which can seem like that will never happen. And when he finally stops spinning, he will start all over again. He laughs and smiles when he does this. And he loves to jump. On his indoor trampoline or a mat on the floor or when he grasps your hands and wants you to hold them while he jumps up and down over and over again.  Occasionally he will walk on his tip toes for a while and I have yet to determine if this is a form of stimming or just a part of who he is.

In July of 2017, he received an official diagnosis of MERLD. Mixed Expressive Receptive Language Disorder.  

Mixed receptive-expressive language disorder is diagnosed when a child has problems expressing him-or herself using spoken language, and also has problems understanding what people say to him or her. Follow the link above to learn more in depth information. Being in Speech Therapy, once a week for the past two years have helped him to expand his understanding, but there is still so much more for him to learn and understand. He also receives speech services through our local school district once a week as part of his IEP (Individualized Education Plan) for the integrated preschool program he is a part of.

received_2179141075706423

He relies on visual supports at school and home to help him understand what tasks he needs to be doing and how to accomplish them. Or when we need to prepare him for appointments or outings, we can show him with pictures and he gets it, but tell him and he may or may not understand. And some of the visual supports need to be broken down into steps until he learns them.  It doesn’t seem like it would be a big deal, until you try to teach him something new and he just wants to try and figure it out on his own, but has no clue how to do it. Steps are important. For example let’s say we want him to wash his hands. When he first learned to do this independently, he thought you just got your hands wet and that was it.  So Step 1 – turn on the water (with supervision or the bathroom will be flooded in no time-no joke) Step2 –  test the water-is it too hot or cold?? Step 3 – put your hands under the faucet and get them wet. Step 4 – put soap on your hands. Step 5 – rub your hands together so the soap gets all over them. Step 6 – Rinse the soap off your hands with the water.  Step 7 – turn the water off. Step 8 – dry your hands. Step 9 – put the towel back. Step 10 – all done. (No more playing in the water!)  Now for you and I we just simply wash our hands. But until he learned those steps he had no idea what it meant to wash his hands.  And the school and us, here at home, still have to remind him that he cannot play in the water or turn it on without help. We will continue to work on that and he may get it one day or he may not, because as I said before he LOVES playing in water.  Imagine having to do that for everything you want to teach him, that’s  just one part of his MERLD. A very small part, but with huge skill set learning.

In October of 2017, after having two unprovoked seizures, he was officially diagnosed with Epilepsy. Since then he’s had many seizures and we’re hoping the anti-convulsant meds he is on will hold the seizure activity at bay. His meds are in liquid form which he gets three times a day in his juice or milk. Sometime’s he is wise to it and will comment how “yucky” it tastes; and I will suggest that we just need to shake it up and mix the juice. The power of suggestion has been enough so far and he will take it. Out hope is as he becomes older he will be able to transition to tablet form of the medications.

Each time he has had a tonic-clonic seizure (formally known as grand mal seizure) he has no idea what has happened only that he is extremely tired and sleeps a lot. He also has absence seizures, where he appears zoned out or staring at something no one else can see. The staring episodes have happened since infancy,but EEGs never showed any seizure activity so we had no idea to be worried or concerned. And the EEG/MRI done in September did not show any activity during the testing. There is no rhyme or reason to his seizure activity. He is not left alone because it is not safe for many reasons, epilepsy being one of those reasons.

And yes, there are many days I’ve thought how much more, Lord? How many more trials will he face, but I know that Jesus loves Tyson as much as he loves all His children.

Right now, Ty doesn’t understand and comprehend all of his medical and developmental delays, only that he goes to the hospital to see his doctors.

When he first went on the medications for his seizure activity, we noticed a shift in his happy carefree self. His meltdowns increased and his behavior became more aggressive and for lack of a better term, angry. His appetite that had once been healthy and hearty became almost birdlike. It turns out that many of the AED (anti epileptic drugs) medications used can have side effects such as the ones we’ve been experiencing and thru trial and error, it may take several different ones to find the right one.

He’s always been hyper, but never so bad that he would be too busy to eat or sleep and bouncing off the walls or invading others personal space such as his peers at school. And because he just started preschool this year, a baseline of data needed to be established before seeing if ADHD played a role in the hyperactivity. After consulting with his teachers and medical specialists, ADHD was confirmed in March of 2018. The seizure meds had seemed to exacerbate the symptoms.

Even through all 5 diagnoses, he is still  full of wonder and adventure, our little blessing.  Yes, some days are very challenging and difficult to find joy when looking on the surface, but if you take the time to get to know him and see  the joy in his eyes and the love he has to offer, he isn’t any different than any other toddler. He is pretty amazing that he holds it together so well and many days when I get tired and wish he didn’t have to follow a medication schedule or have extra therapy to help him learn and blossom, I am forever grateful he has treatments that help.

Two years ago, he was nonverbal and. we had no idea how much he understood and/or if he ever would. Now he plucks dandelions out of the yard and with beaming pride brings them to me to smell and keep!

I will continue to advocate for him. I will continue to educate myself, our family and friends on every special need he has, but most of all, I will continue to thank God that HE blessed our family with this bright eyed babe four years ago. Our life is so much richer.

Thank you for continuing to follow our journey and being so supportive and encouraging!

May you always know how much Jesus loves you~right where you are in this moment.

Many blessings to all of you~Carlene

#HopeAlwaysHaveFaith

 

 

 

 

Advertisements

Cry Out to Jesus

I’ve been crying out to Jesus in despair for several hours. Living with autism isn’t for the faint of heart. In the last four hours, I’ve been spit on numerous times, hit repeatedly, had blocks, toy cars, a toy cash register and anything else he could find to throw at me. My hair has been twisted and pulled, and stabbed with a fork repeatedly and raising my voice doesn’t help and letting the tears and sobs come doesn’t either.

20180408_183447.jpg

I don’t know what triggers these times or why Tyson goes thru these moments. I don’t like them and I hate that in those moments I just want to give up and throw in the towel, but I can’t. He is depending on me to get him through all he goes thru. He depends on all the people in his life to help him learn and grow.

Since he came into our lives almost four years ago, our lives have changed drastically from what we had imagined. There is no time to just sit with my husband and watch a movie, or take walks or have any type of just us time. When Tyson is asleep, that’s when we rest or frantically try to accomplish housework or tackle projects we can’t do when he’s awake.

He plays hard, throws himself on the floor, bangs into and on things, runs into walls, constantly climbing and jumping, banging his head on the floor, into the back of the chair and into other people.

His attention span is only a few minutes unless he is viewing videos or television shows he likes, but we know too much screen time is not good for any child, especially with one that seizures can be triggered by videos he watches depending on the content.

I love this high energy child that is constantly wanting to go places and repeatedly talk about what he knows. Vacuum cleaners are his favorite subject. He wears headphones when they are turned on, but when they are turned off, they are his favorite “toy” of all time. We have to limit his time because of the fixation. He can share with you every single detail and when its time to return them to their storage area, he clings to the vacuum, becomes angry and agitated and won’t let go.

We appear like a typical family outside of the walls of our home. We work really hard to keep him safe and keep him from having outburst or hurting others when we are out. He is always holding our hands, wearing a safety harness, in a shopping cart or any other means necessary to go out into the world. If we go to a park setting, there must be at least three people with him or the area must be fenced in. He loves going and playing at the park, up and down the slides; swinging with wild abandon, laughing and wanting more.

Our home is never clean. Never spotless. Every day, there are toys mixed with food particles from him being angry and throwing bowls of food off the table because he isn’t hungry or doesn’t want what was placed before him. Highchairs don’t contain him anymore. He’s too smart for the five point harness. He knows if can’t get the latches undone, he can wriggle out of the straps with a little bit of determination and grit.

He is so smart. He can figure just about anything out on how it goes together or how it comes apart. He can count to 13 on his own, the number of stairs in our home. He can recite the alphabet and label each letter if asked. He calls himself Ty. Tyson is too hard for him to say right now. He can cook the most amazing meals in his tiny kitchen. He loves mixing and pretending to cook just as much as he likes helping me mix concoctions in my kitchen.

Since beginning this post, most of his toys have been bagged and removed to another room. The TV has been shut off. Music has been turned on. I’ve had to stop writing multiple times to get him off of furniture he should not be standing on, out of paperwork cabinets that hold his care notebooks and IEP plans. Tell him no repeatedly because he wants to make raspberry sounds and realizes he can spray you with his saliva. Position my chair in such a way that he can’t climb on my desk to mess with the mini-blinds covering the window above my head.

In between, he’s had a cup of blueberry yogurt and a cup of milk for a snack and I’m using this opportunity to help him say blueberry yogurt. His language disorder for expressive language is a struggle. His version of blueberry yogurt is boo og. Every moment he speaks is used for speech language therapy. Those moments don’t just happen at school or in speech therapy appointments, every moment he’s awake is when it happens.

Ugh!!! He just drew on his feet with a green marker and dumped his yogurt on the desk! So much for the calm.

The struggle is real. Its a glimpse into living with autism. A mere 5 hours out of 24. One moment he is hugging me, giving kisses and the next he is trying to break out the front door glass with his wooden toy hammer.

I am looking forward to when his batteries run out so I can take a shower and just sit still for more than one second. Right now we need to be in a padded room with nothing but us. I just was hit in the head with his tiny shoes that pack a powerful punch.

My joy comes from the Lord. Not my circumstances. I am so very thankful I have Jesus in my corner.

To the other families that “do autism” everyday, please know you are not alone in your journey. Even though it feels like it.

To everyone, may you know how much Jesus loves you~in every moment you live.

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

 

 

 

 

 

 

Answer the Call

Are you living into the purpose God has called you to do?  I think I am, but how can we really be sure?  I always assumed that “the call” would be something grandiose and bigger than life, but what if it isn’t? What if the call God places on your life is what you would consider everyday mundane tasks?  And what I am becoming to understand and believe is that everything I do should give God glory and Honor.

pexels-photo.jpg

When I was working full-time, I didn’t consider working for a retail giant big box store my call, but I did do my very best to let other’s see Jesus in my actions and words. Seasoning my conversations with salt and grace. Being humble in spirit; no gossip; caring for others more than myself.  Extending grace when that was the last thing I would have done had Jesus not been with me.

God places the desires in our hearts. We have to be willing to pursue those desires.  We have to be willing to be interrupted to take the steps necessary to follow His lead. In this day and age, people will say, ‘I’ll do it when I have more time or I will do it when I have more money to fund it, or five hundred other excuses as to why NOW is not the right time.” And I know for one, I let doubt creep in and say, “you’re not good enough or you don’t have experience in this area or what will people think??” And the reality should be, “who cares?”  If God calls us to do something, big or small, we should jump at the chance, because it’s HIS Will for our lives.  We all forget, myself included, it’s not about us. It’s ALL about Him.

So, while I may or may not be a bestselling author one day, I know that right now the call on my life is to be a voice/advocate for our grandson, Tyson. Advocating for awareness for Autism Spectrum Disorder, Epilepsy, Sensory Processing Disorder and Language Disorder. I know it is my call to lift others up and to encourage them in spoken and written word and action.  I know God is working with me now to teach me who HE is and who I am in Him. Maybe someday, that will turn into a book to share with others, but it is not in my comfort zone to admit that I don’t have it all together and I don’t know everything I need to know and that I still have very much to learn about life, but He gently nudges me and He leads me by the hand, much as my earthly parents used to.  Sometimes he gives me a swift kick to get up and get going, when I would much rather stay in the comfort of my own world.

The past 4 weeks, our series at church as been called Church Interrupted.  God is calling the church, you and me, to do His work.  In your office, at your schools, at the deli where you get your meat, everywhere we go, He is calling us to remember our purpose here on earth.  To advance the Kingdom of God.  To lead others to Jesus.  For those of us that have accepted Jesus Christ as our Lord and Savior, with a repentant heart, we are to seek forgiveness, show forgiveness and accept the gift of salvation to live eternally with the Father.  And the only way to the Father is through Jesus. The only way to Heaven, is through Jesus Christ. He paid the price, on the cross. He bled and died for All of us and All our sins. There is nothing else you can do to get into Heaven no matter how good of a person you are. But while you are here, you are to do the Will of the Father.

Allow the Holy Spirit to lead you. When you pray, and can’t find the words, do not fret, because the Holy Spirit will provide the words needed as they waft up to the Father. Trust your instincts. Become in tune with Him. God lives and dwells in the hearts and souls of believers and therefore knows our desires. He knows what He wants to accomplish in our lives and there will be many times of refining and purifying, tests and trials, we will walk through. Storms that will cross our paths, but do not fear for He is always with us. God is bigger than any fear that tries to squelch those dreams and desires.

I will bring that group through the fire and make them pure.. I will refine them like silver and purify them like gold. They will call on my name, and I will answer them. I will say, “These are my people, and they will say, ‘The Lord is our God.”- Zechariah 13:9

Trust that what God is calling you into or out of, that He will equip you with everything you need to accomplish the task. Do not be afraid. Do not grow weary. Do not give up. Let you Faith in the Lord guide you when your eyes cannot see the outcome. Be a blessing to others as the Lord blesses you.

May you know that Jesus Loves You~at all times and in all seasons of your life. #HopeAlwaysHaveFaith

Blessings to each of you ~ thanks for stopping by!

“Go Away!”

Go Away is a phrase we hear all the time when Tyson doesn’t want to do something.  It’s easy for him to get his point across, instead of trying to put the words in an entire sentence.  My husband and I heard those words this morning, as we were working on getting his coat on for school.

Tyson has been sick for over a week, not with the flu, thank goodness, just a nasty cold that didn’t want to leave. So, for him, having a structured routine that had become anything but structured the last week, he was used to staying at home and sleeping much later in the day.

His vocabulary is getting bigger every day. For that, we are so thankful and praise the Lord daily for opening up his mind to be able to put his thoughts into words, even when he shouts and kicks and struggles to get away and says, “go away!”

Two years ago, he only had two words. Two. Ma & Da. And the only person he has ever called ‘da’ is his papaw.  Now, he addresses his mother as Meem, I have no idea how that came about, except he has always called me Maw (for mamaw) and there were times he would say mom, to his mother, but then one day, wanting to get her attention, he shouted “Meem,” and it stuck! His style of communicating is music to our ears, even though they are in short one-three word sentences. And the hardest part is understanding him because he struggles with middle and ending sounds of words. But, I have no doubt, as we continue to work with him, through his Prompt trained SLP (Speech-Language Pathologist), his wonderful Play Project Developmental Specialist and at home, those sounds will come, eventually. We still use PECS (Picture Exchange Communication System=Visual Supports) and occasionally sign language, along with his voice.

He was amicable to getting dressed and even eating breakfast, which is usually a struggle this early in the day. but when it came time to put his coat and hat on, the battle ensued. Most people can’t imagine it would take two grown adults, one holding onto him for dear life, while the other works to get the coat on and keep it on, long enough to get it zipped and snapped  He was determined he was not going to school. As he slid off my lap, onto the floor and Mike trying to keep his arms in his jacket, asked Tyson, “don’t you want to go to school and see your friends?” He replies, “no friends, home.” Five minutes before the bus came, he was in his coat and hat, but still saying, “go away.”

As he begrudgingly took da’s hand and walked out to board the bus, I realized it’s like starting all over again. When his routine is disrupted, it usually takes a week or two to get back in the habit of everything and how hard that must be. It’s almost like an adult that gets to go on vacation or take time off from work, getting back into the swing of things isn’t always pleasant when you would much rather stay curled up under the covers.  I am thankful that he is feeling well enough to go to school so he can get back into the game of learning, but so we can have a short break. TYSON BUS

We love this little guy, but we didn’t plan on having a small child to care for at this stage in our lives, so even a short 3-hour respite is welcome!

Every child is a gift from God. Every child is a blessing. Tyson has many struggles that at times can seem insurmountable, but we get through it because we love him. 

Until autism became part of our lives, I never fully understood the impact it can have on a family unit. It changes your perspective on so many things, but the one thing that it has done for me is to remind myself that everyone on this earth has struggles and challenges. Many are unseen.  I can’t see the sensory processing difficulties he has until he starts jumping off of furniture and climbing all over the place, I don’t realize he is missing something until he wants to be tickled and then laughs and gasps for air, says “go away,” and in the same breath, says “more tick”. He is overcoming his tactile challenges with PlayDoh and sand, and will even eat pasta as long as it doesn’t have cheese on it. I thought every child loved mac-n-cheese!  He loves cheese and he loves elbow macaroni, but not together. 

I can’t wait to talk to him about his day. I do most of the talking. Asking yes or no questions to find out what he did in class. And I am sure his first day back, those questions will have to wait until he wakes up. I know when he gets home, he will be asleep on the bus and we will carry him in and lay him down and enjoy just watching him sleep. It is peaceful in these moments. But once he is awake, then the fun will begin. Jumping, climbing, dumping his toy bins, creating what seems like a danger zone to walk through, but he loves having all his toys surround him. I think it makes him feel more connected.  If you are a parent or caregiver of someone with Special Needs, take a break when you need it, don’t give up hope, celebrate every single accomplishment they make and know you are not alone in this. All of us need one another to make it through this thing called life.

Heavens Very Special Child 2

 

Romans 5:4-5 The Message (MSG)
3-5 There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience, in turn, forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

 

May you know how much Jesus Loves You~right where you are in this moment!

Blessings~Carlene

 

Subtle Differences

In the past few days, I have been pushed around, challenged to hold true to my faith and always remember that there is a reason for everything and God is in control.  I haven’t been pushed around by bullies but by this mysterious disorder known to many as Autism Spectrum Disorder and Sensory Processing Disorder.

For the last year and 4 months, autism has lived in our home, officially.  And while, we have learned many things, and learned how to cope and work with this mystery, I am learning that it truly is a lifelong learning process, not just for our grandson who has autism, but for those of us that love this little guy and want so much for his life to be as normal as possible.

We can’t go to the park or even in the backyard unless there is a minimum of three adults with him. Why? Because he is a runner. He loves to run, and he doesn’t care if he is running down into a creek bed of freezing cold water or into the street with traffic. When he starts running, no amount of hollering at him to stop, or calling his name works.  Which means you have to run just as fast as he does or faster in hopes you can catch him before he enters the danger zone. This was the case yesterday morning when he figured out how to get out the front door, off the porch and ran into the backyard in his pajamas of shorts/shirt and socks in 20-degree weather. He was on a mission to get to his swing set.  He is a sensory seeker, which is part of his sensory processing disorder, he is looking for things that will fill the need of whatever stimulation he is missing and he will climb on anything, regardless if it is meant for climbing or safe to be doing so. EVERY DAY is a battle. And if he doesn’t have something solid to climb upon, he will use a toy or toys stacked up and attempt to do the climbing.

He figures ways to climb over the safety gates that are installed to keep him safe, on end tables and desktops if he sees something he wants or wants to investigate. And then he will jump off of them, regardless of how high up it is or what may be in his jump zone that could be dangerous or harmful to him.

Tyson Cliimbing

He doesn’t like loud noises and as much as he does well at his preschool in a small group of people, he doesn’t like a lot of people in one space. There are times he will run and hide in a wooden cabinet or under a table or cover himself with a blanket, so he is safe and hidden from the world. As he becomes stronger with each passing day, it is difficult to keep him reigned in one area. At age 3, he weighs 38 pounds and is over 3 feet tall.  Putting things up out of his reach is not as easy as they were a year ago. He has always had great strength since birth. Never needed help holding his head up, although we did.

He slides down the wooden stairs on his belly, feet first, and laughs and giggles when he gets to the bottom, running up to do it all over again. I hold my breath a lot. I am so afraid he will seriously hurt himself, but I’ve come to realize that the vestibular input and proprioceptive input he gets from doing a thing like this, he can’t get any other way. Or no way that he likes so far. His mini trampoline, use to provide enough input, he didn’t need more aggressive forms, but now the trampoline just isn’t enough. He can be very aggressive at times, and its hard to try to explain to him that he can’t headbutt others or constantly bang his head on the floor or the wall.  I know I am not the only person that has lived with a child like this, there are many of us that live in silence, because people who don’t experience it on a daily basis, can’t begin to imagine what it is truly like. And then there are sweet calm moments, like right now, where he climbs on my lap, gives me a hug, lays his head on my shoulder, just for a moment to take a break from his high-strung activities and lets me know he loves me and for a moment all is peaceful. But it usually doesn’t last very long.

Each one of us is a work in progress, from the day we are born.  Life experiences shape who we become and why we act the way we do. For most children, language develops at 6 months.  It may just be babbling, but it is a form of language. Speaking and language development is crucial to know if your child has a problem or a developmental delay in communication. By 18 months, he still wasn’t saying anything except ma and da.  Not even mama or Dada, And every time we saw the pediatrician, we were assured that he had done so many other things, early (sitting, crawling, walking) that he was just gonna be slower with talking because he was busy. Repeated attempts to have him tested fell on deaf ears. Well-meaning friends and family offered advice.  Here’s my two cents on this matter: If you think your child has any type of developmental delay, press for the physician to make the referral for testing, to determine what the problem is. You know your child, You spend the most time with them.  I am glad we finally found a doctor that was willing to listen to our concerns and give us the referral we needed.

When he was diagnosed at 26 months, he had just those two words and very little eye contact with anyone. Thanks to early intervention services, speech therapist, developmental specialists, and lots of work at home with him, he was able to start preschool this year, four days a week for a few hours a day. He started with 40 words, well under what a normal two-year-old would have and some of the 40 words were his “made up” words for objects he knew about.  Now after being in preschool for over 2 1/2 months his vocabulary is growing and he is just starting to put two or more words together to form two-word phrases. Since being in therapy, we have learned that his language delays are both expressive and receptive language delays. So his understanding is limited right now, but he is learning and he is thriving.

We are very fortunate that while most children on the spectrum have struggled with sleep, he is not one of them. There is always something to be thankful for. Always.

And when I want to sit and cry because life isn’t fair, and these were the cards we were dealt, I could be angry with God and I could wonder why him? But I am reminded of a story in the Bible, that puts it into perspective the best.

John 9:1-5New Living Translation (NLT)

Jesus Heals a Man Born Blind
9 As Jesus was walking along, he saw a man who had been blind from birth. 2 “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

3 “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him. 4 We must quickly carry out the tasks assigned us by the one who sent us.[a] The night is coming, and then no one can work. 5 But while I am here in the world, I am the light of the world.”

I don’t know why our grandson has Autism, but I do know that God will work it all out. I know that I have learned many things about this Spectrum Disorder and while he is learning his way and knowledgeable about many things he can’t share with us yet, I see it every day.  He is very smart for a three-year-old. He loves to fiddle with things and take them apart to see how they work, he might be an engineer someday or maybe even a teacher. He is learning what numbers are and what they mean, learning about colors and shapes and loving every minute of it. He is slowly starting to interact with others, and I am thankful for that. At home, his interactions are that of a typical child, in public, it’s a slow process, but a process just the same. He uses a combination of spoken words, pictures, and sign language to request what he wants. Most of the time, we understand, the frustrating times comes when there is no picture and he tries and tries and still we don’t understand. As much as it is frustrating for us, I can only begin to imagine how frustrating it is for him.

His memory is excellent. If he has experienced it, he can share in one-word utterances the details. We have been talking to him lately about getting his hair cut.  It’s way too long for our liking, but he is very sensitive to anyone touching his head or messing with it in any way. But he remembers his first haircut. We took him to a local salon. (Me, his grandfather and mother whom he refers to as maw, da, and meem) And we rode in da’s car and boo boon (and papaw drove and after the haircut, they gave him a blue balloon).

But it was not a fun experience. It took two of us to hold him, while the stylist, tried using scissors to trim his hair nice and neat and we ended up getting a buzz cut because that was the fastest (and probably the most painful for him, i.e. loud, vibrating noise).

As I finish this out for today, he is pacing around the living room, with his shoes on and his backpack, he’s waiting for the bus. It will be a long wait, the bus will not be here until tomorrow morning. But telling him that school is closed, telling him there is no bus coming to pick him up, hasn’t worked. So, until he tires of wearing his backpack, he will continue to walk back and forth with the backpack on. Sometime’s he gets “stuck” and because it isn’t harming him to do this, we allow it. It makes him happy.

Isn’t’ that what we all want for our children/grandchildren to live happy, carefree lives. He was sad that we didn’t go to church today. But it is too much on me to try to contain him in the parking lot, while holding his hand, walking with a cane and carrying a purse and diaper bag, so we missed out today. We played together, read the first few pages of a toddler book and he climbed and I held my breath.

And tomorrow, I will do it all over again until he goes into another phase, that no one knows what it will be or what it will look like. And Jesus will get me through it all. He always does.

May you know how much Jesus loves you~he will meet you right where you are.

Blessings to you~Carlene

 

 

Grand “parenting”

When I had my children, I dreamt of my children growing up, getting jobs, college, and moving out to start their own lives. I didn’t dream of raising my children and then having to help raise one of my grandchildren. Sometimes though, for reasons beyond our control, life isn’t fair and tough choices have to be made.

Our son has moved out and is working and living on his own. Our daughter moved out for a month and a half, moved 1300 miles away and came home due to circumstances beyond her control and found out she was going to have a child. That was three years ago.  There were many mixed emotions from all of us, and wading through them and helping her make decisions wasn’t as difficult as some might believe because in my world love always wins.

1 Peter 4:8New International Version (NIV)

8 Above all, love each other deeply, because love covers over a multitude of sins.

All of us sin, all of us make poor choices and we can choose to love and be loved or we can not. So, even though our daughter made some very poor choices, we chose love over anger and fear.

We offered to help her figure things out and help her with her son. We had no idea that meant we would basically be raising her son, while she merely existed. We know that our daughter has mental health problems that need much more therapy than she is currently receiving, but we also are aware that as an adult, we cannot force her to be tested for conditions, unless she chooses to do them on her own.

We chose to show grace. To love unconditionally, which isn’t always the easiest choice and to help her in any way we could. In doing this, we have enabled her to take advantage of her situation. We are truly aware of this. But we also believe that she has similar conditions as her son, and believe that she is doing all she is capable of. It is definitely a difficult situation.

We never, in a million years, thought we would virtually be raising our grandson. She takes care of him, but not all day, every day as most parents would. She helps feed and changes him, but she struggles with his hyperactivity and constant need for attention. It breaks my heart. I love her and I love Him.

When our grandson was born, healthy and happy we had no idea the challenges that all of us would face. As he grew, we noticed how he didn’t speak and how he would sit and bang his head back and forth, he has an unimaginable strength for a toddler and many other signs. But he crawled and walked very early, so his weaknesses in other areas were passed off by physicians as no big deal. Some babies that have developmental milestones and reach them earlier than most, just means other areas will be slower.

It took until the age of two for medical professionals to take us seriously and realize that he did have developmental delays that needed to be addressed. At age 26 months, he was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support and he was considered nonverbal.

The past year there have been many arguments between my husband and I and our daughter. There have also been many times of laughing and crying. We knew that our grandson would need more support and therapies and care than she could offer. And so we have become “grandparents raising grandchildren”. Our daughter still retains custody of her child and they live with us. For many personal and private reasons, we have chosen not to pursue custody at this time. I have been granted Power of Attorney over all of his financial, medical and educational needs, until such time, if at all, that his mother can take over 100%.

FB_IMG_1496319303477

Ours is a unique situation. Many grandparents raising grandchildren are doing it because the biological parents aren’t in the picture anymore or are incarcerated and unavailable or aren’t fit to care for themselves, let alone their children. We know she loves her son as much as he loves her, so we continue to help them both.

Taking care of our grandson is a full-time job. He cannot be left unattended for any reason.  He must be supervised at all times. For the most part, he is a very happy child, but there are times when he can be very angry and destructive. I believe the anger stems from him not being able to communicate and the frustration that comes with that. He doesn’t thrive if toys aren’t scattered everywhere. I don’t thrive very well if the house is in total disarray.

Over the last year, I have done hours of research on how to teach our grandson to communicate through words, sign language and PECS (Picture Exchange Communication System). He has learned his colors, the alphabet and learning how to listen. As with any three-year-old, whether they are on the spectrum or not, selective hearing is a given. But there are many times that he does not hear me, because sensory overload is in full swing and where we can distinquish the sounds and filter out what we are hearing to focus on one voice or one noise, he cannot. Not always. He loves working with sequencing patterns and this is no surprise because he loves patterns, lining objects up or stacking them .  He likes to help put groceries away, canned goods being his favorite, because he can sort the ones that are the same and stack them up. He doesn’t like when they are taken away from him and put away.

As I sit here and write this blog, what used to take maybe 15 minutes now takes hours, as there are constant interruptions. He wanted juice. He wanted a snack. He wanted me to play with him. He wanted me to hold him. He wanted to watch a video. He wanted to grab things off the fireplace mantle that he is not allowed to have. He wanted to carry the cat that doesn’t like to be carried. He wanted to take paperwork and books off my desk and play “52 pickup”. He has plenty of toys to play with. He likes to look at books, but not have them read, that takes too long. He can only have board books. If they are not board books, I must sit with him, or he will tear the pages out and rip the binding off the book. He wanted me to blow bubbles with my chewing gum and then he wanted my glasses off and music turned on, which means he is tired. He touches my face, plays with my hair, rubs his eyes, yawns and just when I think he is almost out, he pops up and hugs me, jumps down, runs back and forth in the room we are in and lays down to play with his cars. I get worn out just watching him. Last night, he found the Febreeze air freshener spray and made sure the living room was smelling good. By the time I reached him, getting out of my chair was difficult, he had pretty much used up the remaining 1/2 of the can that was left! Could I yell at him about it? Nope It was my fault I left it within his reach. I simply forgot to put it up. It still smells like Hawaiin Breeze in our little corner of the world.

The accordion style, hinged gates keep him from the stairway entrance and other parts of the downstairs where he cannot go unless we are with him. Kitchen. Laundry Area. And although he is mighty, he hasn’t figured out how to open the gates, but he is determined. I used to have a foot rest in the room until he realized that he could push that up next to the gate, so he could climb over and jump into the next room. Now, there is no stool to rest my legs on, but he is safe. It’s a trade-off I am willing to do. All interior and exterior doors have additional hooks and locks on them, so he doesn’t run outside and into the street or take off.

Right now, he is napping on the loveseat, after sitting with me while I rocked him back and forth and we listened to music. He loves music, but there are some songs that he cries, maybe the instruments cause the pain or the level of noise is too great. I draw him closer and hug him tight.

Over a month ago, we took him to get his haircut. It was a life draining experience for all of us. He does NOT like his head being touched for any reason and the scissors and clippers scared him, but he needed a haircut and we knew it needed to be fast. If I mention to anyone the word haircut in the course of a conversation, he will say “me”, “da” “maw” “mom” and “car”. And I will say, “Yes, you, me, papaw and mommy rode in the car and we went and you got your hair cut.” His response is “Yay!”. In his world, yay means “yay” and “yes”. He remembers everything.  He remembers the way to a certain store and if we don’t go the same way as we always do, he cries. He does not like a deviation from his routine at all.

As we continue to go to speech therapy every week and have The Play Project come into our home every week to work with him on engaging with others, pretend play, and communication, I will continue to strive to learn all I can to be his advocate and help him succeed.  My hope is that one day, his mother will want to be involved more.

We have three other grandchildren that we love also and sometime’s I feel as if they are slighted, but we do our very best to be in their lives as well and spend time doing things they like to do. Being a grandparent raising a grandchild is a struggle some days, because you don’t know where being the parent stops and grandparenting starts, but you know that you will do whatever is necessary to make sure that your grandchild with special needs thrives in their life.

Just a little over a year ago, I was working full time in a large retail company interacting with adults every day. Now, most of my interaction is with a few adults and a child that laughs, giggles, screams, cries, pounds his head on the floor and I wouldn’t have it any other way.

The hardest part is gaining support. I belong to several online groups of people that understand what I am going through, what we are going through and there we can share our stories, our tears, we can be real, no sugarcoating necessary.

My advice to everyone that knows grandparents that are raising grandchildren, whatever the reason is, offer to give them a break. The reason we have our children, when we are young, is so we can keep up with them and their needs. As we get older, it’s not always as easy. Be that shoulder when they need to vent a little or need a shoulder to lean on. Each situation is unique. Don’t separate yourself from your friends because their circumstances have changed. Ask what you can do to make the load a little lighter. It really will be appreciated more than you know.

May you know that Jesus Loves You! #HopeAlwaysHaveFaith

Blessings to you!