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Early Intervention is Key

Early intervention is so important when you think that your child or a child whom you love has developmental delays. Push for the doctors to listen to you and if your child’s doctor doesn’t listen, find another doctor.

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Every parent, whether by birth or adoption, want only the best for their child. They want to see them live to their fullest potential, fit in with the world around them and succeed in every way. When you notice that developmental milestones aren’t being reached, it may just be that they are taking their time. I am not saying to push the panic button. However, if you have a concern, express it, explain it and wait for the answer. If their physician sees no concern, ask them to explain it again.

I have become an advocate for this cause because I live with it every single day. Our grandson, Tyson has Autism Spectrum Disorder, @level 2 requiring substantial support. That is the official diagnosis. He is three now. When he was just a little over 2 years old, we finally found a doctor that was willing to refer him to our local Children’s Hospital Developmental Pediatrics Clinic for further evaluations.

The signs started when he was about 6 months old. He didn’t ever really crawl on all fours, it was more of a “leap-frog” type of crawl. From birth, he had the strength of an ox to hold his head up and when you tried to lay him down to change him, he would twist and turn and place his body in such awkward positions, we didn’t know what to think. Diaper changes were traumatizing for him. The only way to get him to remain partially calm was to sing Amazing Grace to him to settle him while he was being changed.

When he was able to sit up on his own, he would and still does, bang his head and rock back and forth. Immediately we were concerned that maybe he had autism. He wasn’t cooing or saying mama or dada and when he tried to communicate, he would scream inaudible noises. Each and every time we brought our concerns up to his pediatrician, who had been one for over 30 years, we were always met with comments, such as “he has done so many other things early, he will talk when he is ready”. So we decided to trust her judgment. We didn’t know that maybe just maybe she wasn’t the right one to make the decision for us.

At his 18-month check-up, he was very active, wouldn’t sit still for any reason and loved climbing and jumping off chairs, stools, exam tables, but he didn’t like being examined, and his strength would reappear, he would twist and turn and this was chalked up to his age and something that was not a normal day thing.  He had mastered walking on his own at 10 months, but still wasn’t showing any signs of talking.  Trying to figure out what he needed or why he would cry became a guessing game. It was so frustrating for all of us, but mostly for him.  Again, I asked, are you sure it isn’t autism and again I was told he did not exhibit any signs of autism. He was a boy and some boys develop slower in communication than girls and she was concerned. Again, we trusted our pediatrician.

We watched videos of the ABC song, we tried to show him pictures of animals and mouth the words to him when speaking, hoping anything would break through in his mind. The main concern at that point was how will he communicate what he is feeling, needing, wanting if he can’t talk to tell us.

We were very lucky that due to his mother being a single parent, she had signed up for Early Intervention Services when he had been born, in the event he would need them down the road. In the State of Ohio, Early Intervention services are from birth to three years old.

We had Help Me Grow Brighter Futures make home visits from 1 yr to 3 years old. This program focused not only on the child but also helping our daughter be the best parent she could be. They were able to get more services for Tyson and our daughter than we would have on our own. An ISFP (individualized services family plan) was initiated with goals and timelines to meet those goals for both our daughter and Tyson. If goals had not been met by the deadlines, we took a look at the goals, revised what needed and kept going.

HMGBF also helped us get connected with another early intervention provider, PACE (Parent and Child Enrichment Program) through our County Developmental Disabilities Offices. After evaluations with PACE, he started working with a speech therapist in the home, as well as a developmental specialist to find out exactly what he could do on his own and what he needed help with. These specialists were able to form a bond with him, as well as teaching all of us how to work with him at home, for continuity of care. They also helped us have him evaluated for Sensory Processing Disorder by an Occupational Therapist and it has been confirmed he is a Sensory Seeker and Avoider, depending on what we are talking about.

We must be ever vigilant and he can never be left alone. As with any three-year-old, he is very inquisitive and examines almost everything he can get his little fingers on, but he also throws objects as a way to get input his brain is not getting on its own. If you wish to read more about Sensory Processing Disorder, please click the link. He is considered an elopement risk or flight risk child. He doesn’t perceive dangerous situations as dangerous. He doesn’t understand that the street is not a place to play or if something is hot, he cannot touch it. And the most important thing is we can say, “No, stop” and he doesn’t have what his brain needs to process this information at the moment.

Autism Spectrum Disorder is a neurological condition and everyone on the Spectrum has their own challenges. The saying for people diagnosis with ASD is, “If you have met one person with autism, you have met one person with autism.” No two people on the spectrum are alike. What one treatment or therapy works for one person, may not work at all for the other.

From experience, living with and witnessing Tyson daily, Early Intervention Services are very important because a child’s brain is most impressionable and develops by age 3 if services are not started til later, they will progress, but it may be slower.

I am not a medical professional in any way, just a grandmother that has become an advocate for this beautiful little boy who wants so much to communicate with the world around him. If you would like to follow Tyson on his journey, please visit Missing Pieces-Living with Autism.

He has made progress since his diagnosis, so much so, that he will be starting Special Education Preschool services this fall in an integrated classroom. I can’t wait to see how he soars!

For more information on Autism Spectrum Disorder, please visit Autism Speaks.

May you know how much Jesus Loves You!#HopeAlways#HaveFaith

Blessings to all!

Reblogging -Come and See

 A great read about Jesus was written by a fellow writer. I encourage you to read and follow the link at the end of his story.

Blessings!

There was a man who walked on this Earth about two-thousand years ago named Jesus. In fact, every time you write the date on a check you attest to the reality of his existence. There are some today who say he was a great teacher. Others say he was a prophet. But Jesus claimed to […]

via Come and see! — excatholic4christ

Fibromyalgia~Not for the Faint of Heart

FibroWarrior

Living with fibromyalgia isn’t for the faint of heart. You learn to live with a high pain tolerance, otherwise, you would never get out of bed. The television commercials, saying fibromyalgia is a disorder with widespread pain doesn’t even begin to describe the pain and makes it seem that there is no way you can all over body pain at once, but you do.

Just being bumped into, can send shockwaves through your nervous system and can start a chain of events. Most times I have to still myself and breathe deeply to get past it. Today is a moderate pain day, but my energy levels are almost non-existent. I did manage to get dressed and eat some breakfast/lunch.

I made the mistake of thinking I could accomplish what needed to be done over the weekend and doing it on the same day instead of breaking it down into two or three days. I miss having a clean home. So, I set to task to cleaning and putting away toys that a three-year-old think it is okay to string through the house. Then came folding a week’s worth of laundry for a family of four, because it was getting harder and harder to find clothing items, without digging through 4 baskets of laundry. I played with said three years old, and him climbing on me and jumping up and down, big hugs and squeezes. He is full of energy and I fake it a lot.

Dishes had piled up in the kitchen, recyclables sat everywhere that need rinsed out, and placed in the bin. The floor needed cleaning. Two hours later the kitchen was cleaned. You can’t tell it now, it looks like I haven’t touched it.

What normally would have taken two to three hours max to clean, took almost 8. The constant need to sit down and take a break is ever present. Standing for more than 10 minutes at a time causes burning and searing pain in my lower back causes excruciating pain in my hips and legs. My legs and feet swell if I am up on them for any length of time and my skin stretches so tight my leg weeps. Even my legs “cry” because of the pain. Today, I have been sitting trying to rest and store up any small amount of energy so I can go to my women’s group at church tonight. If I do anything, I won’t have enough to drive up there and walk in. Dusting hasn’t even happened yet this week. I see it needs to be done, but that requires more energy than I have.

I have incessant itching on my arms and back, daily. Although I use prescribed lotions to help, it doesn’t take away the itching. Raw spots appear, followed by scabs. My arms look like a war zone, so when I go out I wear long sleeve shirts even if it is warm out, fewer questions and embarrassment to deal with.

Sleep patterns are no longer restful sleep. When I was working full time, I would be severely depleted when I came home and by the time dinner and bath time was over, sleep was not a problem. Now insomnia attacks daily. As a person that also suffers from severe sleep apnea, not only do I use a CPAP machine at night to help keep my airway open, in the attempts to achieve REM sleep, the restorative sleep our bodies need, I also must use supplemental oxygen, because without it ,my oxygen levels in my blood drop to dangerously low levels. My oxygen levels drop to 60%. It should be at 92% or higher. It is so frustrating. I can feel exhausted and just want to go to bed and then once I am there, I can’t sleep. I have learned sleeping without my CPAP causes a whole host of other problems. Headaches, body cramps, confusion, extreme fatigue. It’s like sleeping without any oxygen coursing through your veins. Almost a lifeless state. And days after that occurs, you literally drag yourself to just function. Doing anything that requires attention to detail, can cause you to nod off. It is not a way to live.

When I first wake up in the morning, I have a hard time focusing, even with my eyeglasses on. My eyes feel like there is a haze glued to them and it takes almost 30-40 minutes before objects are clear enough to see.

Sitting in any one position for too long causes pain in my hips and knees and since their is also arthritis in my back, hips, and knees, it is a constant battle to just sit, move, lie down. I know from living with all of these chronic ailments that I have to keep moving and have to push myself, otherwise, I will be in such horrific pain, I won’t want to do anything. But, I have to be careful not to overdo it or I will be down for the count. The fatigue is always there. It’s not just being tired from working too hard or not enough sleep, it is fatigue you can feel in your bones. It’s the type of fatigue that if you don’t lay down and rest for at least several hours, you will be physically sick.
You never know when it’s going to hit you and you pray you are at home when it does. It’s like being on a long road trip and you’re stiff and sore and if you don’t get out of the vehicle soon, you might just crash.

Fibromyalgia causes so many other symptoms, you never know what your day will bring until you are in the midst of it. For some people, heat makes it worse. For me, the cold is worse, because of arthritis. Although, I do tire more easily in humid weather.

To look at me, I may look tired and maybe even close friends see I am in pain, but I don’t look like I’m sick. I am thankful I don’t look like how I feel because it would be a scary sight. Between irritable bowel symptoms and constipation, there is always a fear of what will happen at any given time. It is no way to live. When you have FM, you are aware of everything but have no way of controlling it. Many people I know that have FM, use narcotic painkillers to help with the pain. I am not one of those people. Due to my oxygen levels and breathing problems, I can’t take those. So I use OTC pain meds to help take the edge off as well as Anti-Depressant meds to control some of the pain and the depression that comes with it.

I hesitate to make any concrete plans with family and friends, because once it’s time to go away, sometimes I just can’t do it. Or I do go and pay for it after the fact. This usually throws me into what’s called a fibro flare. When I’m in a flare up the pain is magnified 500 times. I don’t want anyone touching me and I don’t even want to breathe. Obviously breathing is important.
I wouldn’t “wish” this disorder on anyone. Living with chronic pain is one of the hardest things I have done so far.

I used to love to craft and plant flower beds and spend time outdoors, but now planting my flowers is out of the question. I don’t have the stability to kneel down on my knees or I fall over. I don’t have the muscle tone to stay upright. The degenerative disc disease in my lumbar spine makes it nearly impossible to get up and down without help. IF I sit on a hard surface, it is easier to get up and down, but that too causes pain; if I sit in a recliner or on the sofa, I can’t get up without assistance. I prefer not to lay in bed all day, although there are days that is exactly what I have to do.

The one thing that gets me through all my pain and afflictions is Jesus Christ. I know He is with me always. I cry out to Him in prayer and let His peace wash all over me. The pain doesn’t end, but I know that no matter what pain I am enduring, Jesus understands and can comfort me.

Some days I cry and grieve of all the things I have lost that I cannot do anymore because of my disabilities, but I cherish the friendships I have gained because they have become a support system to me because these special friends suffer just like I do. We vent to one another; we laugh and cry together.

Invisible chronic illness is hard to live with because many people do not understand. Those of us with this disorder don’t like canceling plans and we don’t like complaining. We live in silence for the most part, because we too get tired of hearing it.

If you know or love someone with chronic pain and illness, be kind. If you haven’t lived the battle within, ask questions, but be prepared you may not like what you hear or you may want to help, but the best thing, sometimes, is just to listen. Let them know you care. It’s hard.
May 12th is Fibromyalgia Awareness Day. Learn what you can, because my guess is you know at least one person that suffers from this. It might even be you.

Blessings to all!

New Eyes

Ephesians 4:30New International Version (NIV)

30 And do not grieve the Holy Spirit of God, with whom you were sealed for the day of redemption.

How many times a day do I grieve the Holy Spirit of God, with my words and actions? Jesus died nailed to a cross for me; for you. He took upon Himself the sins of the world, and He did this because His Love is greater than our earthly eyes can even begin to imagine or grasp.

Every time I argue or disagree with someone, do I stop to think that maybe, just maybe they are in their own battle and instead of being loving and kind toward them, I am only increasing their pain. I don’t ever set out on my journey for the day wondering who I can hurt, but I know I have, and words can pierce through your hearts in ways that aren’t easy to fix.

Just as God is my Heavenly Father and Creator, I as a parent have been grieved by actions of my children. As a parent, I am to protect them, teach them and love them, whilst allowing them to make mistakes, just as I have made, so they too can learn from them.  It really hurts my heart, when I can’t fix them or fix the world for them.

Our daughter faced bullying at a young age, and the reality is because she hasn’t accepted the Lord as her personal Savior, she has no room in her heart for forgiveness. She holds onto the hurt and spews it from her mouth when she feels there is no way out. She puts up walls and those walls become impenetrable to break through. Every disagreement, argument or hurt that she feels comes out in anger toward whoever is in her presence when she explodes. In moments such as these, I want to scoop her up in my arms and hold her tight and protect her from the hatefulness the world has to offer. That is not an option. She is in her 20’s now and has informed me more than once that she is not a baby. Wrongs become grudges that never go away. They have such a stronghold on her that the only thing I can do as her mother is to pray that God will continue to work with me and others in her life to show her the way.

So, the point I am trying to make by sharing this little glimpse of my life, is if she grieves my spirit, how much more do I grieve God’s and how do I fix that? I do pray and ask for forgiveness; I walk with Jesus daily and allow His Holy Spirit to guide my actions. There are many times throughout my day that the Holy Spirit will nudge me to go one way and convict my spirit that I need to do something, even if it’s painful for me to do.

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How many times does Jesus have to tell us that there is nothing we can do to earn His love and salvation?  Once we accept Jesus, we are to love like He does. See the world thru His eyes. Every day He works on me to be a better person. Forgiveness is the key. Showing grace and mercy even when we don’t want to. Being willing to admit that being right all the time isn’t’ worth it, if it hurts the people you love the most.

James 3:5-9New International Version (NIV)

5 Likewise, the tongue is a small part of the body, but it makes great boasts. Consider what a great forest is set on fire by a small spark. 6 The tongue also is a fire, a world of evil among the parts of the body. It corrupts the whole body, sets the whole course of one’s life on fire, and is itself set on fire by hell.

7 All kinds of animals, birds, reptiles and sea creatures are being tamed and have been tamed by mankind, 8 but no human being can tame the tongue. It is a restless evil, full of deadly poison.

9 With the tongue we praise our Lord and Father, and with it we curse human beings, who have been made in God’s likeness.

All of us must remember that our words can build up or tear down. Be kind. Think before you speak. Love wholeheartedly. Trust in the Lord and follow his lead!

Blessings to you and yours!#HopeAlways#HaveFaith

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You’re Never too Old

Learning  a new task  or skill comes easy to many people, but for other’s it can be a challenge.

At 51, I had thought I had learned everything I would ever need to know to make it in life. I was wrong. I am now learning about Autism Spectrum Disorder. I am learning that there are many different aspects of ASD and that what one person struggles with on the spectrum, may look totally different for another.  Learning about ASD requires patience, finding resources that are reputable and are knowledgable about what they are teaching, as well as learning how to advocate for the person that has this disorder.

I have immersed myself into learning about how someone with Autism is affected my Sensory Processing Disorders/Sensory Overloads and when you are out in public, what may appear like a parent not taking control of their child, because the child is literally having a meltdown, it makes me stop and think now, before passing judgement. It could just be that the child really is having a tantrum (something they do when they don’t get what they want); when a child that has a neurological disorder succumbs to meltdown status (they have no control over how they respond, even though they wish they did).

As a person that has never relied on structure or any type of routine, I have learned how very important it is to have structure and routine, to be able to prepare our grandson, who is affected by ASD what will happen next. Learning about strategies in Autism is not just something caregivers should just glance over, it needs to become as much a part of you, as Autism is to your loved one. Because our grandson is non verbal, at the precarious age of two, I have had to learn what PECS means. I have had to learn about reinforcing behaviors and try to get into his world, at his level-instead of him in mine. And that’s okay, it’s just hard for me to get on the floor and play with him like I need to, but one way or another, we figure it out.autism

The PECS system is awesome. PECS stands for Picture Exchange Communication System. I am looking forward to getting some PECS from a friend later this week as her child has outgrown some of them.  When he Autistic person needs or wants something, if they do not talk or sign, that’s where the pictures come in. They have the ability to look on their PECS board or in a binder and find what they want to tell you. When they hand you the picture, you can reinforce that is what they are asking for and take care of the request. Then the next step is to thank them and praise them for a job well done.

We also do a lot of motor skills play, learning to stack things and put objects in their correct location, working on cognitive functions as well as five million other things that neurotypical people (those without Autism or Developmental Delays) do automatically.

When our grandson was first diagnosed, it was overwhelming. More than I can even describe because I don’t know how to pour out those emotions on paper. I knew one thing for sure, though, I would do whatever was necessary to aid in his learning what he needed to learn to succeed in life.

So, the next time you are faced with learning a new task or skill, don’t be afraid to jump in with both feet. Even if you don’t get it right the first time, keep trying. Many successes that people have achieved have happened as a result of failures and lessons learned.

May you be blessed and remember Jesus Loves you!

 

 

 

Pieces

Yesterday our grandson was diagnosed with Autism Spectrum Disorder (ASD).  It is a relief to have a diagnosis, but I am so overwhelmed right now that the only thing I know to do is keep praying that God will guide all of us on this journey and that he will know how much he is loved.  At 26 months, he is nonverbal for the most part and it has been a concern for some time now. I am upset with myself that when we asked his doctor at 12 months and again at 18 months that our concerns were dismissed and that we didn’t have enough foresight to ask for a second opinion.

Would it have made any difference? I really can’t say.  I know that early intervention is key. He has been undergoing speech therapy for over 6 months now, and seems to lose words faster than he gains them.

He has his own way of communicating with us and for the most part we know what he wants or is trying to ask for, but I can’t imagine how difficult it is for him. It’s sad. I know there are many people that have ASD that function very well in the world. I know there are other’s that struggle too.

The developmental staff of doctors and psychologists and nurse practitioners have been awesome and I am glad they are part of his team. They loaded us with so much information yesterday and warned us not to try and read it all in several days. Take time.

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We know this will be a lifelong journey, with bumps along the way. The one thing I read that “struck me funny” was:

If you’ve met one person with autism, you met one person with autism.

The information went on to say that every person that has this disorder is usually totally different from another person that has it and that’s why you can’t group them into a typical set of rules. What works for one, may not work for another.

I am looking forward to learning more and empowering myself with knowledge about this disorder. Finding other parents/grandparents to get together with and talk to.  As we continue to support our daughter in raising her son as a single parent, we will do whatever is necessary to ensure that he thrives in every way possible.

Thanks for “listening”.  Much love to all of you over the weekend coming up and many blessings for next week.

Remember Jesus Loves You,

Carlene

 

 

Coping in the Valley

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I am so thankful for God and His Word. In Psalm 23 he tells me that no matter what I walk through in life, down low in the valleys or high on the mountaintops he will be with me. Right beside me, holding my hand and guiding me. I have no reason to fear. Jesus is all I need. He gives me rest and renews my strength.

For several years, my husband and I, along with other family members have known that my father-in-law has suffered with Dementia.  It is hard watching someone you love lose their memory, struggle with simple tasks and become agitated and angry because they perceive something that isn’t really happening. The brain can play so many tricks on a person when they are ill.

You talk to them on the phone or in person, and in a short period of time, you have heard the same “story” more times than you care to remember, but you keep silent, because you love them. They talk about their lives when they were younger, but aren’t sure what happened 20 minutes ago.

They know their brain is failing them and it is so frustrating to them. They ask how can we fix this? Living like this is horrible. And you have to be the one to tell them, there is no fix. The docs might be able to give you medications to help slow the process, but there is no cure. It will never get any better than it is now. You pray for a cure.  You care for them the best way you know how, but then one day it becomes apparent to all the family, they need more can than you can give. Any child that loves their parents, only wants the VERY BEST for them, their life and their well-being.

By the time my father-in-law was diagnosed, he was in Middle Stage Alzheimer’s. I’ve read on Alzheimer’s National Organization page that many people are diagnosed in the middle stage. I am still learning about all the stages of Alzheimer’s and all the symptoms associated with each stage. It’s scary. Not just for him, but for all of us that love and care for him.

Hallucinations are hard for him to deal with; he thinks that what he sees and hears is real. He has fears that aren’t easy to calm down. It’s constant reminders that he is safe; no one will hurt him; he is loved. My husband is the oldest child of 5 siblings. He and another sibling have been taking care of his father on a constant-continual basis for several years now. Taking him to medical appointments,helping with medications, grocery shopping and other tasks he needs help with; along with staying with him on many occasions and giving basic care and support.

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When their mother passed on, they spoke of how life would be for their dad and vowed to one another, he would never go to a nursing facility to live out his life. Now the time has come, where it may be the best option for him. At best, we have to do what is in the BEST INTEREST of their father and not what they think might be best. At worst, they can do nothing and Social Service organizations can become involved and make decisions on his behalf.

Job 4:2-4 New Living Translation (NLT)

2 “Will you be patient and let me say a word?
For who could keep from speaking out?
3 “In the past you have encouraged many people;
you have strengthened those who were weak.
4 Your words have supported those who were falling;
you encouraged those with shaky knees.

As for my father-in-law, we don’t know what the future will bring. We can only trust in God to guide us on this new journey. We can reach out to others that have gone before us or are still going through it and we can accept advice and encouragement along the way.

In the beginning, our parents  raised us, taught us, disciplined us and most of all loved us and now it is our turn to teach our parent(s), be their rock, be their one constant in their life.. Many of us would not be the people we are today, without the loving instructions we were shown and given in our childhood days.

The one thing I know for sure is the sun will rise another day. Life will go on. Changes will occur and the one steadfast thing that will never change is Jesus. He is the same today, as he was thousands of years ago and he will be the same in the future.

sunrise-795311_1280Isaiah 26:3-4 New Living Translation (NLT)

3 You will keep in perfect peace
all who trust in you,
all whose thoughts are fixed on you!
4 Trust in the Lord always,
for the Lord God is the eternal Rock.

If you want to learn more about Alzheimer’s, please fee free to explore the links below:

National Alzheimer’s Association

WebMD Alzheimer’s Center

National Institute on Aging

Walk to End Alzheimer’s

Memory Care Locator Services

Lord Jesus, As we embark on this journey of caring for our loved one with Alzheimer’s,  I beseech you to give us clarity in making difficult decisions, wisdom to know what to do and when to do it and to continually be our strength and hold us up as we tread this unfamiliar territory. Please continue to be with our father and help him on his new walk. Lord, your word says that your Peace passes all understanding and we are to lean on you. Thank you Lord for your continued love and faithfulness in all areas of our lives daily. We exalt you and Praise your Name Jesus. In your Mighty name, I lay my requests at your feet. Amen

It is my prayer that if you or a loved one suffer from any form of Dementia or Alzheimer’s that you know you are not alone. Our Heavenly Father is always with you. He will never abandon you. Jesus Loves you.

Blessings today and always,

Carlene