Cancer Free And Trauma…Plus Some Potty Training Tips

I haven’t been up to really writing this post even though as of January 2nd, our beliefs were finally confirmed after a biopsy, that I am indeed cancer free.

You see, except for mild pneumonia, from which I was able to recover at home, this was my first medical scare that required a hospitalization, a MRI under anesthesia, and a procedure in the OR all within 3 months.  Going to an oncologist also isn’t fun even though nobody ever really threw around the “C-word.”

This is unusual for people with severe cerebral palsy.  I’m very blessed to not have needed surgeries to fix joints and other things that can come with having severe or even mild cerebral palsy.

But after over 2.5 years of trauma due to the three major losses in our family, this pretty much sent us over the edge. I felt guilty at first for not being as happy that I was cancer free like everyone else because, for me (and my husband since he has to care and comfort me), it isn’t over.

Plus, because I’m unable to walk around like typical people and I have spasms, it takes me longer to physically heal.

As one of my good friends says, it’s actually satan-induced anxiety and Post Traumatic Stress Disorder (PTSD) that I have.  They are not mine to own.  Going to the bathroom can still be scary for me.  Sometimes certain things that happen in the bathroom or in my body send me into a panic attack or PTSD episode.

I want to talk about PTSD for a moment especially with this recent school shooting.  As I said in my previous post, people in this society don’t take mental health issues seriously.  They worry about the physical well-being of people, and only and/or repeatedly argue about objects that hurt and murder people when they are in the wrong hands.  Keeping them out of the wrong hands is crucial but also almost impossible because if someone truly wants to do something bad, they will.

That’s the sad truth. So learning how the young mind works and about mental health issues is one of the best ways to stop some or most of these horrible tragedies.

What is PTSD?

“Posttraumatic stress disorder (PTSD) is a psychiatric disorder that can occur in people who have experienced or witnessed a traumatic event such as a natural disaster, a serious accident, a terrorist act, war/combat, rape or other violent personal assault” (American Psychiatric Association, 2017, https://www.psychiatry.org/patients-families/ptsd/what-is-ptsd).

This video also describes PTSD very well.

I am working very hard to overcome this. My abusive background doesn’t make it easy because there’s PTSD from that as well.  However, through medication, including medical marijuana, meditation, professional counseling, writing positive notes to remind myself of all that’s good in my life, my small support group, and spending time with the Lord, I am slowly getting better.

It’s quite a process and I have to learn to be okay with however long this takes.  I have to learn how to not berate myself every time I perceive a “setback.”  Even learning self compassion is extremely difficult for me.

Why?  Because I grew up with a dad who was abusive, and school personnel putting me down. Plus, my disability has occasionally been treated as a “burden.”  Or at least this is how I felt as a child sometimes.

Children are very sensitive to their parents.  Everything we say to them is ingrained into their brains FOREVER — even if we don’t think they are listening.

Potty training for children is one of those crucial times when parents either remain patient, compassionate, and encouraging or become angry, punitive, and sometimes even abusive.  In both cases, most parents mean well but some understand gentle parenting and the consequences of not being gentle while others do not.

Bathroom trauma is REAL.  I found this article to be very informative about bathroom trauma in children.  It’s so important that young children have positive associations with going to the bathroom.

Here’s what I tell parents regarding potty training their children:

*Wait until the child is showing interest in the bathroom to slowly introduce him/her to the potty.

*Let them lead the way.

*Read fun books about going potty.

*Let them pick out their new underwear.

*Give them plenty of choices for what potty they want to use.  Some children like the small, portable potty chairs and use them while watching tv or wherever they are most comfortable.  Other children want to use the toilet with a small seat on the toilet and a footstool to put their feet on.

*Allow them to experiment with going back and forth between diapers and underwear.

*Expect many accidents and don’t overreact.  After all, we ALL have accidents.

*Gently remind children to go potty many times as they are often so into what they’re doing that they miss the signals that they need to go until it’s too late.

*NEVER force potty training.  Don’t punish or reward them.  This shouldn’t make them feel as if their whole identity is contingent on being able to go potty. You may celebrate by doing the “potty dance,” saying, “Yay! You did it,” and giving high fives.

*Poop is the hardest for young children to master when it comes to potty training. Give them plenty of liquids to keep their stools soft. Hard, painful bowel movements often make young children (and even some adults) afraid to go to the bathroom and then they hold it too long.

*Be careful with flushing the toilet in front of the children. It could startle them. And children can view poop as “a part of them” for a while and will get very upset when it’s flushed down the toilet.  This won’t last long.

*Use correct terms for body parts.

*Make the potty routine fun.  Read books, splash and/or run water (it helps them pee), sing fun songs, have special “potty toys,” and do whatever else you can to make going potty as fun as possible.

*Finally, feel free to set limits on the type of talk and behaviors that are only for the bathroom.  Children don’t have filters and exploring new language and body parts is so fun and funny to them. Give them a safe, private place to do this.  This is an excellent time to also reiterate body consent and who may and may not touch certain body parts.

If these basic guidelines are followed by us, most children will master potty training by the age of four.  Please be gentle during the whole potty training process even if it’s really hard sometimes.

Having experience with PTSD, abuse, and trauma, I truly implore anyone reading this to place more importance on, and time into, creating healthy human beings from conception on. They are our future.

Every child and adult reacts to trauma in very different ways and that needs to be fully explored and parents should do their best to look for warning signs as should others in the community.  It still takes a village to raise children.

Mental illnesses usually are rooted in childhood trauma.  Here are two excellent books that explain how trauma can affect children:

The Boy who was Raised as a Dog by Dr. Bruce Perry.

Ghosts from the Nursery: Tracing the Roots of Violence by Robin Karr-Morse and Meredith S. Wiley.

I truly believe that by respecting children from conception on and providing compassion to them in the worst of their moments is the way to a healthier—both physically and emotionally—society.  Compassion matters!

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Guest Post: A Childproofing Checklist for Parents with Disabilities to Be By Ashley Taylor

Please join me in welcoming Ashley Taylor from disabledparents.org.  She is a parent with a disability and so when she asked me if she could guest post on my blog, I was delighted.  I have severe cerebral palsy but I don’t have children and sometimes that’s held against me.  So here’s a parent with a disability that is treating her children respectfully.  I hope you will enjoy her posts.

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Image via Pixabay

Childproofing a home before a baby arrives is a challenging chore for any expectant parent. And it can be especially daunting for parents to be who are dealing with disabilities. But getting an early start and tackling tasks systematically can help make your home safer for you and its new occupant. Here is some information and advice to get you going.

Background on Parents With Disabilities

Research shows there were 4.1 million parents with disabilities in the United States in 2014, or around 6.2 percent of parents with children under 18. And, though attitudes are starting to shift in some states, the majority have dependency statutes that allow courts to reach the determination a parent is unfit based on the parent’s disability. So, while it is important for every expectant parent to establish a safe environment in their homes, it could be even more critical for those whose skills might be scrutinized by well meaning family, friends, and officials.

Fortunately, some agencies provide services specifically designed to assist prospective and expectant parents with disabilities plan for life after labor or adoption. Services could include home visits to evaluate areas for safety purposes, lending out adaptive child care equipment for people to try before they buy, and performing follow-up visits as the baby ages. Advocacy agencies such as Through the Looking Glass are a good place to start when seeking resources and training programs.

What to Do Before the Baby Arrives

There are some things you should mark off the child proof checklist prior to a baby’s grand arrival in its new home. Here are some suggestions from sources including Redfin.

General Safety

  • Install carbon monoxide detectors if you have an attached garage or use oil or gas to heat your home. Check batteries twice a year.

 

  • Install and maintain functional smoke detectors. Check them monthly and change batteries at least once a year if your detectors require them.

 

  • Keep a fire extinguisher on hand and have a fire escape plan in place.

 

  • Keep nightlights away from fabrics, including bedding and curtains, and opt for night lights that don’t heat up when used.

 

  • Put together a first-aid kit for babies and take an infant CPR class.

 

  • Install childproof locks on cabinets containing poisons, medicines, and cleaning supplies.

 

  • If your home has lead paint that’s peeling or flaking, hire a certified Lead-Safe professional seal or remove it.

 

  • Make sure your water heater is set no higher than 120℉ to minimize the risk of accidental burns.

 

  • Install plates that slide closed over electrical outlets.

 

Furniture, Rugs, and More

 

  • Cover sharp furniture edges with bumpers or padding.

 

  • Stony or sharp fireplace hearths should also be covered and expectant parents should also install heat-resistant gates for when the fireplace is in use.

 

  • Put non-slip pads under area rugs that don’t already have non-slip backs.

 

  • Anchor heavy furniture that could tip over, such as dressers and refrigerators, to the wall or floor.

 

  • Consider investing in baby gates to block off areas that you plan to keep off limits for your little one, but avoid accordion-style gates that they might get stuck in. For rooms with doors, try knob covers that make it doors difficult to open for little hands. Test some options early to make sure they also meet your accessibility needs.
  • Install window stops or guards.

 

  • Clip looped window blind cords and install safety tassels. Fit blinds’ inner cords with inner cord stops.

 

  • Review safety suggestions and product recalls before buying furniture for the baby’s room.

 

There will be other childproofing considerations once your baby starts crawling and walking, but this list gives soon-to-be parents a strong start toward creating a home that will help keep all its inhabitants happy and healthy for years to come.

The First Christmas

This is an especially difficult holiday season for us due to another loss of a loved one and my medical issues. I got the results of my MRI, and I now have to get the suspicious mass checked out that was discovered when I was hospitalized for a bowel blockage.  My biopsy is scheduled for January 2, 2018.

So we’re dealing with fresh grief again and my anxiety level is really high right now. As I have said many times, children who are spanked/hit/abused have a higher chance of getting an anxiety disorder. I’m working on getting my anxiety under control.  Not easy!

All this has me thinking about the first Christmas.  My friend and I were discussing grief and how this Christmas doesn’t feel magical or joyful to either of us.  One of my other friends got us a new small Christmas tree and scented candle to smell like a tree in order to change things up and make it a little less painful.  We also got a new outside Christmas light.

There’s joy amidst the pain.  Just like the first Christmas.

Imagine the emotional drama Mary and Joseph went through when Mary got pregnant with Jesus.  How do you explain that to people who might not believe you that you are carrying God’s child and did nothing wrong?  Thank the Lord, God explained to Joseph that he could still marry her after the Baby was born.  He was going to divorce her.

They had so much joy in having God’s Son!  How humbling it must have been for Mary.  But she had to deal with everything that comes with normal pregnancy.  And, again, how did she explain to people about the pregnancy?

Keep in mind that they were living in poverty and in tumultuous political times.  Imagine having to travel by camel to register in their hometown of Bethlehem while being in the last stages of pregnancy.  I can guarantee that Mary experienced pain which must have upset Joseph because he loved her and had to do his best to protect her and the Baby.    That must have been a lot of pressure on him!

Yes, God was with them.  But that doesn’t mean it was easy!

After arriving in Bethlehem, Mary went into labor.  She didn’t have the Baby in a nice home or hospital.  There was no room for them in the inn—both physically and emotionally—so she gave birth in a place where the animals were kept.   It was not very sanitary or comfortable, making labor, which is no fun in and of itself, even more difficult.

But here comes Jesus Christ and there was great JOY!

“In the same region there were some shepherds staying out in the fields and keeping watch over their flock by night.  And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them; and they were terribly frightened. But the angel said to them, “Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord. 12 This will be a sign for you: you will find a baby wrapped in cloths and lying in a manger.” And suddenly there appeared with the angel a multitude of the heavenly host praising God and saying,

“Glory to God in the highest,
And on earth peace among men with whom He is pleased.”
When the angels had gone away from them into heaven, the shepherds began saying to one another, “Let us go straight to Bethlehem then, and see this thing that has happened which the Lord has made known to us.” So they came in a hurry and found their way to Mary and Joseph, and the baby as He lay in the manger. When they had seen this, they made known the statement which had been told them about this Child. And all who heard it wondered at the things which were told them by the shepherds. But Mary treasured all these things, pondering them in her heart. The shepherds went back, glorifying and praising God for all that they had heard and seen, just as had been told them” (Luke 2-20, NASB).

There was pain and joy. It wasn’t this totally joyful event for Mary and Joseph, yet, there was plenty of joy and rejoicing!

That was until King Herod found out about this Baby that people were coming to worship.  How dare they worship a baby and call Him “King!”  King Herod had a fit and ordered his men to kill all the male babies that were 2 or younger.  There was a lot of screaming and weeping from parents who had their babies murdered for no reason.  God told Joseph in a dream to take Jesus and Mary to Egypt until it was safe for them to return to Bethlehem (Matthew 2:16-18).

This meant another trip across the desert with the Baby.  Jesus may have been a toddler by then.  I know Jesus was completely without sin, but I truly believe that He behaved as a typical infant and toddler; crying and going through the typical developmental stages are not “sin” as many Christians believe.  See more info here.  He cried when He needed something such as a feeding, nap, diaper change, or just to be comforted.  We all know how difficult it is to travel with a baby.  And then they were in hiding until Herod died.

Yes, there was joy on the first Christmas but the reality is that it wasn’t all joy.  There was plenty of pain, fear, stress, and confusion.  God was there through it all, but due to sin in the world, He had to watch suffering too.  Jesus chose pain over continuous joy in Heaven in order to save us from our sins.

Also, God didn’t rebuke or punish them for expressing their pain and frustration.  He loved them and that’s what He still does with us.  He suffers along with us and comforts us while correcting us gently when necessary. 

We should do our best to be there for our children instead of punishing them. God does not punish us.  Therefore, we should do our best to help our children instead of punishing them.

 “Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow”  (‭James‬ ‭1‬:‭17‬ NASB).

We are going through some rough, scary things right now, but I know God is with me/us.  He will see us through this painful, scary season and I am counting on next Christmas being more joyful. In the meantime, I continue to look for the moments of joy.

Every good thing comes from the Lord.  If you too are going through some rough things this holiday season, please know that you’re not alone. God’s with you.  Please try to find friends to help support you.  It’s okay to change traditions if the old ones are too painful this year. We hope to get back into our traditions next Christmas. Whatever you need to do to find some joy and peace this Christmas, please do.

Please keep praying for me. Thank you so much!

Incidentally, I still have a very limited number of books if you want a signed copy for $10.  Free shipping in the continental United States. Please contact me and we’ll work something out.

May everyone have a peaceful, blessed, and merry Christmas and a Happy New Year.

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MRI Update And Christmas Clearance Book Sale

I got my MRI yesterday. I had to be put to sleep for it due to my cerebral palsy and spasms. Hopefully tomorrow we’ll find out that the mass they found when I was in the hospital for my bowel blockage is benign. Thank you so much for your prayers and patience with me in not staying on top of everything like I always try to do.

Remember! My book is limited quantities and only $10 with FREE shipping in the continental U.S.A. It makes a great gift!

I hope to write a post soon about the first Christmas and how there’s so much love from God, but in this world, joy and pain coexist and this is not punishment!  We just live in a very broken world that Jesus came to restore.

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What satan Intended For Harm; God Is Using For Good. My Health.

Note: this was written on November 8, 2017 but I always want my husband to edit my posts.

“When Joseph’s brothers saw that their father was dead, they said, “What if Joseph bears a grudge against us and pays us back in full for all the wrong which we did to him!”  So they sent a message to Joseph, saying, “Your father charged before he died, saying,  ‘Thus you shall say to Joseph, “Please forgive, I beg you, the transgression of your brothers and their sin, for they did you wrong.”’ And now, please forgive the transgression of the servants of the God of your father.” And Joseph wept when they spoke to him. Then his brothers also came and fell down before him and said, “Behold, we are your servants.” But Joseph said to them, “Do not be afraid, for am I in God’s place?  As for you, you meant evil against me, but God meant it for good in order to bring about this present result, to preserve many people alive.  So therefore, do not be afraid; I will provide for you and your little ones.” So he comforted them and spoke kindly to them” (Genesis 50:15-21, NASB).

As many of you know, if you follow my Facebook page or Instagram account, I was hospitalized a couple of weeks ago for a bowel blockage and a mass was discovered on my CT scans.

I had to go to an oncologist even though they don’t think it’s cancer. Nobody suspects cancer. This doctor just knows how to go about this. The exam went well. The doctor was great at talking me through it. The nurses and my husband were also wonderful at talking to me and distracting me so I could relax as much as possible which isn’t easy with cerebral palsy and you’re nervous and having uncomfortable things being done to you.

I thank God for legal medical marijuana; my anxiety level would have been debilitating without it.  However, I was very anxious nonetheless.  My heart rate was 117 (a special “sign from Heaven from my mother-in-law) and then dropped to 115 so it helped me not get any worse.

The doctor showed us both CT scans and the mass in question.

He gently used his finger to probe the area and confirmed that the mass was still there.  I felt a little pain when he pushed on it but I’m not sure if it was from the mass itself or from me spasming because of the probing.  So I will have to get a MRI as an outpatient (with sedation due to my severe cerebral palsy and spasms).

Unfortunately, it’ll have to be done at the hospital so that the anesthesiologist can keep a close eye on me with my cerebral palsy and asthma, so an “open MRI” is not an option.

My husband can stay with me until I’m put to sleep for it and will be right back when I am done. I shouldn’t have to be so sedated that I will need intubation.  As of now, the MRI scheduling is still being worked out,  but I want to get it over with so they’re going to try to get me in sooner. I said any day but the 17th because I NEED ink therapy!

Tattoos really are one of God’s ways of bringing me peace and everyone at the shop have been very supportive.

We don’t know what the mass is but the MRI will tell us if it’s benign or malignant.  The doctor said it is a soft tissue mass. After the MRI, he will determine if I need to have a biopsy. He’s trying to take it slow and not go invasive with me unless it’s necessary.

My friend with severe cerebral palsy said she has many benign masses from having multiple bouts of bowel blockage, so hopefully this will be just a benign mass, too.  We’re trying to think positive and pray.

Walking through the cancer institute made me sad. All those people are fighting cancer. I’m NOT going to be one of them. Please Lord.

I wish this were over so I/we can keep working on getting back to a better place emotionally.  Our anxiety has been really awful and I met with a Christian counselor.  She confirmed that God isn’t doing any of this to us and that satan LOVES messing with us when we are down. She affirmed that everything we’re feeling is normal considering what all we’ve been through the past 2 years and God is right here even when we don’t feel Him. She’s walked this darkness too.

I can’t imagine what it must feel like for children who have been raised in Christian families where they are taught that God wants them hurt every time they are “bad.”  Even though my relationship with God hasn’t been the best lately, I know He’s helping and comforting us.

God is using this for good!  He turns everything that satan means for our harm into good.  I don’t understand His ways but I know He is love and that life just happens.  We must teach our children that God never hurts us!

Jesus wept.  Jesus pleaded for the cup to pass from Him so He wouldn’t have to suffer and die on the cross even though He knew that that was what He was here to do and would go through with it because of His great love for us.  Before He died, He cried out loudly, “My God, my God!  Why have You forsaken Me?”  It’s ok to feel anger, anxiety, pain, fear, loneliness, confusion, and despair.  Jesus felt it.

May we teach our children that God suffers right along with us.  He is a wonderful God Who comforts and loves us.  He is not the Author of suffering.

Please keep praying for us.

On a happier note, my husband and I celebrated 19th anniversary of togetherness-dating and married years combined! It doesn’t seem possible! I’m grateful to God that He gave me a WONDERFUL guy who loves me NO matter what and CHOOSES to keep caring for me and loving me 24/7!

Clarifying Respect And Age

A while ago I wrote a post in which I stated that I don’t believe people should be respected solely because they are older and that true respect is mutual.

Beka from “Climb A Tree With Me” created this meme from that blog post.

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Some people had a hard time with this, so let me see if I can explain. I know not everyone will agree with me because we still live in an age where “respect your elders” is shoved down our throats from birth and if children dare assert themselves in a way that is deemed “disrespectful” to their elders, they are punished.

If you spend time reading my blog and book and other social media outlets, you know that I am a huge advocate for respecting everyone from conception to death. I don’t see age as a requirement for automatic respect. Everyone deserves basic respect, kindness, and courtesy.

The problem is that some people abuse their position as an authority figure or as an older adult to demand respect. As I pointed out in my blog post to which I linked at the beginning of this post, this often occurs in the parent-child relationship.  The parent demands respect from the child, but doesn’t treat the child with the same respect.

A child who is not raised with respect will not respect the parent.  He/she fears the parent and then becomes rebellious and/or resentful.  How can we expect children to respect us when we treat them as second-class citizens?

Childism is alive and well in our society. Here’s the definition of childism:

“Childism is defined as ‘a prejudice against children on the ground of a belief that they are property and can (or even should) be controlled, enslaved, or removed to serve adult needs'” (Gold, 2012, https://www.psychologytoday.com/blog/child-in-mind/201201/understanding-childism-are-we-prejudiced-against-children).

This comes in the form of abortion, cry-it-out, demanding things from children that they are incapable of doing, yelling at them, saying harsh things to them, shaming them, spanking/hitting, grounding them, not listening to them, not taking them seriously, and just acting as if they are far below us.

The worst thing is that children have no voice!  Every other minority group has formed groups to give them a voice and change the way they are perceived and treated, albeit we have a long way to go in how minorities are perceived and treated in this world, but at least they have a voice.

Since children don’t have a voice, it’s up to people who see them as the beautiful human beings that they are to speak up for them. As someone who wasn’t always treated with respect by my elders, I am even more passionate about this. And due to my severe cerebral palsy, I still often get patronized and disrespected by adults of every age.

And, as I pointed out in my original post about this, sometimes disrespect continues in family relationships as the stronger one tries to bully, shame, and manipulate the “weaker” one.  When this happens, the most respectful thing to do is to set boundaries and/or walk away.  I have had to do this many times throughout my adulthood.

Unfortunately, children cannot “just walk away” or set boundaries.  Children are stuck in that relationship until they are adults.  This is not fair.

Children are born social beings who love unconditionally!  They are just learning about everything and we are their teachers. We teach respect by being respectful to them.  This does not mean we don’t set limits and boundaries or don’t discipline them.  It means we discipline them without punishing them and without being harsh.

Yes, everyone deserves respect. The elderly deserve respect. But just because we are a certain age doesn’t give us the right to demand and force respect. Respect is earned by being respectful and apologizing when we mess up.  

This world is becoming less and less respectful. It’s not because we’re not “disciplining aka punishing” children, it’s because we are treating them with less respect.  

Respectful children have been raised with true respect, and thus, offer true respect to their elders.

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My Child Abuse Awareness Ribbon Tattoo

About a week ago I got my beautiful child abuse awareness ribbon tattoo.  It came out so much better than I imagined!

It’s serious but I wanted something to give hope and the flowers do just that!  I honestly think it’s the best child abuse awareness tattoo I have ever seen.  I’m very grateful to my tattoo artist for coming up with it!  Please see my other tattoo posts on my getting tattoos with my severe cerebral palsy.

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Child abuse is 100% preventable!  Sadly, many pro-spanking advocates try to claim that spankings prevent abuse but any type of hitting is abuse because it leaves marks that are not always visible.  Plus, if one believes she/he can inflict pain on another human being, he/she will.

Research also shows that spankings usually increase in intensity, putting the child at a higher risk of being abused.

Then there’s the emotional and verbal abuse that often goes with the physical abuse, like telling the child that “you made me do it.”  Or that “you deserve it.”  Basically putting the child down in any way is verbal and emotional abuse.  The child never makes one do anything.  This is victim blaming.

Finally, there’s sexual abuse and sometimes this occurs alone or with the physical abuse because, for some, spanking children is sexually arousing which is absolutely disgusting.  

I believe that we have to educate people to get them to see that children are unique people. Understanding child development is crucial for stopping child abuse. And allowing corporal punishment with children does not decrease child abuse!  And one should never say he/she is against child abuse when he/she is advocating for corporal punishment.

It shouldn’t matter how old or big someone is, he/she should be protected from having harm inflicted on him/her by another person. It should not be left up to parents concerning how much pain can be inflicted on their children because “children can be subjected to an incredible amount of pain and suffering before our perception of parental prerogative changes to one of parental abuse” (Quinn, 1988, p.19).”

While April is child abuse awareness month, every day children are being abused by the very people who are supposed to care for them.  I got my child abuse awareness ribbon tattoo to remind myself why I keep fighting for children’s rights even though it doesn’t always feel like I’m making a difference. It will also make the public aware of child abuse all year long.

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Reference:Quinn, P. E. (1988). Spare the Rod. Nashville, TN: Abingdon Press.

Guest Post: Did Having Children With Autism Ruin My Life? By Daniel Smith

Note: Daniel is a wonderful Christian gentle parent.  This post really touched me as I have severe cerebral palsy and I always really appreciate when parents let people know that having children with disabilities is tough, but also very rewarding!

Going to tackle a tough question that comes up from time to time.

Has having children with autism ruined my life?  Is this the worst thing that could ever happen?

The answer is an emphatic no!

Aizen’s needs in particular have posed some tremendous challenges to us to understand and learn — and honestly there would have been a time I may have answered yes to this question. Age five, before we were getting support and help, was a particularly rough time because he was biting and aggressive and we didn’t know what to do. He also wasn’t talking which made things extra challenging.

But did it ruin my life?  No — I have had to grow significantly and I had a lot to learn. I have gained skills, understanding, empathy, and knowledge I would never have gained otherwise. Aizen has shown me the world in a way I would never have observed it without him. He has changed the way I perceive behaviours in other people and taught me patience and empathy in stressful situations.

Has this ruined my life?  I’d say the opposite — what I have gained would be enhancements. I am also a bereaved parent and I stress that Aizen is alive, gaining skills, observing and experiencing the world — he’s not broken, damaged, a burden or a problem. The worst thing that can happen — and I know from experience — is your child passing away and having plan their funeral.

He’s a good polite kid who has worked extremely hard for every skill he has acquired — he’s someone who should be celebrated.

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A Mishmash Of Thoughts

This post may be all over the place but it’s based on things I have experienced this week. It was a rough week as May 2nd was the one year anniversary of my dear grandpa going Home. I have really struggled with his passing. He and I were extremely close and he was a wonderful grandfather who never intentionally hurt me.

Since my family has not had any “official” services for him yet and I won’t be able to go to them due to financial issues and a cat who has chronic diseases and is not yet ready to die, I had my own private funeral service on Tuesday May 2nd that included getting a beautiful tattoo.

I kept thinking “goodbye grandpa” during the tattoo which is on my upper right arm.  The tattoo came out perfectly!   Parts of it hurt like heck as the inside of one’s arm is much more sensitive, but my tattoo artist and my husband encouraged me during the tough parts and I breathed and laughed my way through it.  I cried when it was done.

I’m not letting go but I finally feel so at peace that he is physically gone. I miss him and my mother-in-law so much, but I just couldn’t get comfortable with Grandpa being gone until until I got this memorial tattoo.  Plus, he deserved a detailed tattoo. I LOVE my first tattoo which is for him but I was feeling guilty that everybody else has detailed tattoos and he didn’t. So now that I know I can get detailed tattoos, I’m happy I got one for him and the jacket that was his. She made it look like a watercolor.

Processed with MOLDIV

However, I have been experiencing some things that prove how important respect is. I haven’t felt very respected and that has made me lash out. I didn’t repay evil for evil, but I could have done better.

When adults and children don’t feel respected and heard, it makes them angry. That’s why children usually act out.  They need connections and respect.  But it is so hard when you’re doing your best to be respectful and the other person doesn’t respect you. Children don’t mean to be disrespectful as they are still learning how to respect.  But adults should know better.

I also feel like, based on my own experiences as well as observations, people of all ages tend to want to control and manipulate others that they feel are weaker.  These people usually have emotional problems that make them need to feel powerful and in control by manipulating the weaker person.

We see this all the time with the parent-child dyad. The parent finally has someone they can control and manipulate after they were controlled and manipulated as children. They may be doing it unconsciously, but they do it nonetheless.  Others are fully aware of what they are doing.

But another group that is often controlled and manipulated, sometimes even by family, are people with disabilities.  I have severe cerebral palsy and I often feel like people don’t respect me. No matter how old I get, I often get treated as a child.  Of course, anyone who knows my story knows that I was physically, verbally, and emotionally abused by my late dad. I was also emotionally abused by my school aide.

In addition to dealing the my grief of losing my mother-in-law and grandpa as well as dealing with my beloved kitty going downhill and other life stresses, I have felt very disrespected.  Trying to have boundaries and protect myself while remaining Christ-like is not easy.

Of course, this makes me think of children. We need to respect their personal boundaries as we set our own boundaries with them. It is such a helpless feeling knowing that someone you love is trying to control, manipulate, and make you feel guilty for something that you didn’t do. I’m 35 and I’m really struggling with it and I don’t always handle it as well as I should.  It’s no wonder that children have meltdowns and anxiety and feel so out of control when we try to control, manipulate, and shame them. I can relate so much to the feelings children have.

I am at peace with the loss of my grandpa and I am thankful for that. At the same time, it comes to light that we all need to be respected by the people we love no matter what our age is. I don’t believe that elders deserve respect just because they are older.  I believe respect is earned. It must be mutual. It cannot be forced. If it is forced, it leads to strong resentment.

I guess that is my mishmash of thoughts. I hope it helps someone else dealing with similar things. I also hope it helps parents to see how important it is to respect their children. Only through respecting our children will they learn to respect others.

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