Tuesday, April 26, 2022

Questions I Ask Myself Before We Go Somewhere as a Special Needs Family

 


I love this picture of Jordan. I love it because she is such a cool chick and her love for crawfish is strong. I love it because it was her 19th birthday. I love it because we went as a full family to someone's house and made it through the entire party. 

We don’t often go to friends' houses as a family. Well, truth be told we really never go to friend's houses as a family. I hate to say it, but it's mostly our own fault. Jacob struggles with going inside people’s homes. I'm not sure why. He is ok in restaurants and public spaces, but in someone’s home…not so much. His anxiety goes through the roof as he frantically runs from room to room opening doors and cabinets. We hold on to him, but the moment we let go, an escape is inevitable, and he always find his way into the master bedroom. It’s a full invasion of privacy. We’ve only had it happen a couple times and that was more than enough for us to know we never wanted to make friends uncomfortable like that again. So, we typically say no to those events. It’s made us feel very isolated. I know so many families that feel the same. IT IS HARD.

Recently, we had some friends invite us over for a crawfish boil. Instantly I started thinking of the things that could go wrong. What if he does something inappropriate…takes off his pants, makes loud noises at their kids, tries to run into their bedroom? How will I handle it and more importantly how will they? Or the big question…Will I be able to relax?  We often talk ourselves out of things because we know one of us will be chasing and stressing and not able to enjoy it. So, we cancel or we go separately and then I worry if that’s rude. But the biggest thing I wonder before we go somewhere is if they will accept our “normal”?  Ultimately, is this someone that we can trust?

It's important for us to know that we can trust their reactions to the unexpected. It’s important for us to trust that they will accept him and us, even after our type of “different” occurs. The problem with that was that we weren’t giving people a chance for a while. Maybe it’s a protective thing. I am wildly protective of our family. Maybe it’s a comfort thing, I don’t want my friends to be embarrassed and I don’t want our family to be embarrassed. Whatever it was, we would often say no.

I am so glad we said yes this time. I am thankful we gave it another chance. Cret and I had a pep talk in the van before we went in. I told him that I couldn’t believe we were trying this and I was scared it would be a disaster. He laughed and told me it probably would be, but we needed to try. The minute we walked in, Jacob began pulling me wanting to explore and for a split second, fear overcame me. However, I was able to calm him down and give him some motivation to relax.  It turned out to be a really fun time without many issues, although he did run into the master bedroom when I let my guard down. But guess what? Our friend was gracious and understanding.  Another friend came up to him and spoke to him in only a way that a disability family member would. She shared about a loved one close to her that had special needs. It made me feel so good.

I guess I just wanted to share this because it would’ve been so easy to say no or to make up an excuse, but I am so glad that we didn’t. I am glad that we trusted our friends and gave it a shot. We left and looked at each other with huge smiles. What a victory for our family! Sure, we had to bribe Jacob with a big toy, but he managed to stay pretty calm because he knew he was getting that toy. We all enjoyed a day at someone else’s house and God showed me that maybe it was time to start trusting people. I know there will be times where we are let down, but just like with anything in life it is worth trying again. The hard experiences only make the good ones so much sweeter.

Friend, if you are isolating due to the fear of rejection or embarrassment or unease, I encourage you to give it another shot and then give it another shot and then give it another shot after that. After Covid, I think all people can relate to how lonely and sad isolation feels. Friends are such a good gift from God. I pray you find the people you can trust with your family’s “normal”.

Sunday, June 13, 2021

PRIDE



I have a deep DEEP dislike for public speaking, group speaking, or any kind of non one-on-one speaking (with the exception of students). So as I was thinking about what to do a devotion on in front of my pastors in a few weeks, something kept coming up in my heart...

"WOW I AM PRIDEFUL"...I kept thinking


 My pride makes me feel terrified to speak in front of people for fear of looking foolish. Which I promise you…I should be really used to by now.  

 

I know everyone is familiar with pride and knows our pride comes in many forms and it’s something we all struggle with. As an enneagram 2, I can definitely say it’s my biggest struggle. But obviously it doesn’t just affect my personality type. None of us are immune to pride.

 

The Bible talks about how much God despises pride more times that I can count. But here are a few…

When pride comes, then comes disgrace, but with the humble is wisdom.

Proverbs 11:2

For if anyone thinks he is something, when he is nothing, he deceives himself.

Galatians 6:3

Likewise, you who are younger, be subject to the elders. Clothe yourselves, all of you, with humility toward one another, for “God opposes the proud but gives grace to the humble.”

1 Peter 5:5

 

My pride says, “I know better than God knows”.  Of course, that can look different to different people. It isn’t a matter of if we have pride, but where our pride exists, so I think it’s important to recognize it and to keep thinking about where hidden pride is in our lives, so we can put it to death…especially in those areas that maybe aren’t as obvious.  

 

So, I thought I would list 3 secret areas of pride in my life (if I had to list them all we would be here all day) and maybe you’ll recognize something in you that you need to give to God. 

 

First, for me pride can often hide itself within the mask of humility. People like me are people who would rather get a sharp stick in the eye then to share about God’s word in public when asked. Sometimes I like to just give the excuse of being shy, which I am. But that's not the only reason I don't want to speak in public or in front of people. It's not because I am ‘oh so humble’. It does make me happy to do things behind the scenes a lot , but many times I don’t’ like to do those things in public because I am so scared to look like a fool or to mess up. Sometimes that pride is crippling. As I prepare something to say in front of my Pastors, I will have to choose to lay down my pride and honestly that is terrifying. Would you pray for boldness when I do?

 

Second, there is the area of my prayer life. I know that my prayer life doesn’t always reflect someone that is looking to God for daily living and decision making. I realized that when I’m not praying all the time it’s a reflection of my hearts posture towards God.  Is my prayer life reflecting that I believe everything is in God’s control and under his sovereignty? I can’t say that it always does. When I am viewing God rightly, which is having full authority over me, my prayer life is way different. I can’t say that I have mastered that area in my life. Sometimes my pride is thinking I can handle life, especially the day to day without prayer.

  

Last, and I think the biggest area of pride in my life…the area that I have to surrender to the Lord over and over exists because of life situations that are really painful.  Marshall Segal once wrote, “Pain becomes proud because it believes no one else understands. No one feels what I feel. And so pain distances itself from anyone who might try and speak into its suffering.” 

 

I had a really difficult past. As I was learning about Jesus, I would tell myself that my sins were too great for forgiveness. My mistakes were greater than the other peoples at church, and no one could understand…not even God and therefore I couldn’t be forgiven. I thought my pain and my poor decisions were bigger than God’s salvation. Eventually, I humbled myself before God and believed that his death and resurrection was ALL I needed. Nothing I could do was out of His reach.  

 

Even after salvation I still struggle with pride. As a special needs mom, I can’t tell you how many times pride has crept into my life through pain.  Situations, at time feel hopeless, and instead of turning to the very creator of my child, instead of humbly trusting in Him…I turn to books, research, therapists, blogs, friends or even panic.  I worry and then I believe I have to work work work to help him, like it is at all in my control.  And what happens is every single time God shows me who is in control and it is NEVER me.  I waste all that precious time when I could’ve gone to my Father in prayer listening to what He had for me and for my family and trusted Him in faith. So personally, I have to fight my pride a lot. I am not perfect, but the Holy Spirit lives in me and helps me identify my desperate need for God.

 

In Luke 18:9-14 he writes that Jesus

…also told this parable to some who trusted in themselves that they were righteous, and treated others with contempt: 10 “Two men went up into the temple to pray, one a Pharisee and the other a tax collector. 11 The Pharisee, standing by himself, prayed[a] thus: ‘God, I thank you that I am not like other men, extortioners, unjust, adulterers, or even like this tax collector. 12 I fast twice a week; I give tithes of all that I get.’ 13 But the tax collector, standing far off, would not even lift up his eyes to heaven, but beat his breast, saying, ‘God, be merciful to me, a sinner!’ 14 I tell you, this man went down to his house justified, rather than the other. For everyone who exalts himself will be humbled, but the one who humbles himself will be exalted.”

 

And again in Matthew 23:12 says “Whoever exalts himself will be humbled, and whoever humbles himself will be exalted.”

Over and over the Bible shows that humility is the opposite of pride.

 

Humility is the weapon against pride. To me, that means actively pursue placing God above all else especially above myself.

 

I believe even people who’ve been saved for decades can find value in constantly remembering their salvation.  That we are desperate sinners incapable of saving ourselves. God is the only one who can do that. We need to remember God is sovereign over all things. God is sovereign over the things I am really good at and even the really painful things. And for those things I may be gifted with, well He is the giver of those gifts, too. 

 

The Bible says “Let the one who boasts, boast in the Lord.” For it is not the one who commends himself who is approved, but the one whom the Lord commends. 2 Corinthians 10:17-18 

Lord, help me to humbly serve you and love you.

Sunday, May 31, 2020

The UGLY side of autism

I don’t always talk about all the deep dark negatives that come with living the special needs life. I like to stay positive and think on the things of God...of HIS truth. Ultimately, that’s ALL that matters. But I do live in the world. And it can sure be hurtful. And sometimes it’s beneficial to share those things, right? 

I can’t speak to how it feels to be the target of racism. I never will. My skin color shields me from experiencing racism.  However, I can speak on what I know about discrimination. I know that disability has changed the way I view the world. I thank God for autism and I thank God for how disability has changed my family. I thank God that Jacob’s struggles allowed my eyes to be opened to prejudice. Don’t get me wrong, it hurts me that people don’t look at Jacob as their equal. But I am thankful to have a greater understanding of prejudices in this world. 

No, our situation is not nearly the same as what the black community is experiencing and I would NEVER imply that. But I’ve seen people avert their eyes when Jacob's acting odd more times than I can count. I’ve also seen people stare at us nearly everywhere we go. Ive heard whispers, not just from kids, but from adults. I’ve seen many, many moms pull their kids away from him. Add in the service dog and we are stared at like a freak show. 

It’s hard, y’all. Sometimes people look on us in fear, but usually just because we are odd. I’ve heard the rudest and most hurtful comments. I’ve felt judgements. I can’t imagine what it’ll be like when he is making noises as a large male teen or adult. I’ve read articles of instances of police mistaking individuals with autism for people who are aggressive or non-compliant because they don't understand commands and harming them. I’ve heard of moms terrified about police encounters with their adult male children with autism. 

This is not even remotely compared to the amount of horrific racist encounters, but enough to absolutely terrify me. What if Jacob won’t comply? What’s if Jacob won’t answer questions? I can’t even prep him for that. And all of this pales in comparison to what the black community experiences and the racism they’ve endured for years. But do you know what it has shown me? It's shown me that Jacob is NOT considered equal in the eyes of most. People abort babies just because of disability because they feel they aren’t even worthy of life! It’s horribly sad. This doesn’t even touch on what the black community is experiencing. 

But,  I'm thankful for God opening my eyes to this world. I am thankful for God showing me the incredible value of Jacob's life and every single life of individuals with disabilities. How differences are something to celebrate, not to discriminate against.  I am thankful that is true for every race as well. 

All I have is one tiny voice and our tiny experiences, but I will speak up for those that are marginalized. And a lot of tiny voices add up to one BIG voice. I see how incredibly disgusting and wrong it is. Im thankful to God for opening my eyes to my biases and convicting me to my core. God reveal our racism and help us to love as you do! We are ALL created in Gods image.  

If you haven’t searched your heart yet, if you’re confused about all that is going on or if your heart is hardened to this because of riots or protests, I urge you to pray.  No, violence is NEVER the answer. The riots will end, by the grace of God, but the racism will continue.  

I beg and plead with you to ask God to reveal these biases to you so that you can repent and learn to love like Him! I ask you to share your disgust about racism publicly and stand up for truth in any way you can to be productive and helpful. Please speak with your children about racism, about differences, and about standing up for what's right. It's not an easy subject, but when you say nothing, it says a lot. Do not insight more anger and violence, but encourage people to love, respect, and unify together. 

What I know from my very small life is that God can create something new from something very broken. The old me is gone and I cannot give enough thanks to God for that.  God can give you a new heart, too.  A heart that sees things differently.  A heart that loves all of God's creation the way HE does.

'I once was lost, but now I am found.' To God be the glory. 

"My brothers, show no partiality as you hold the faith in our Lord Jesus Christ, the Lord of glory." James 2:1

Saturday, April 11, 2020

Why I Share the Full Easter Story with My Son Who Has a Cognitive Disability


Celebrating Easter should always include sharing the good news of the Gospel with those we love.  The story of God’s perfection, our sinfulness and separation from God, and the saving work of Jesus is the ultimate Easter message. As Christians, our love and value of people go hand in hand with sharing the good news.  But, does the good news of the Gospel apply to those with intellectual disabilities?  Should we share about Jesus’ death and resurrection with them when we don’t know if they can respond?

Since Jacob has autism and speech and language communication disorder, it is often tempting to do everything for him and to simplify life.  For instance, Cret and I can tell that he wants milk when he is looking in the refrigerator, so we get it for him.  We can tell when he is frustrated at the sound of thunder and we quickly grab his headphones for him.  Though his therapists continuously remind us of the hindrance we can cause when we assume instead of having him ask us for things verbally, we still occasionally take over.  Since each word and thought he has is slowly articulated, we often answer for him when we are in a rush or not thinking.

People that teach individuals with special needs can sometimes make this mistake, as well.  The Gospel may not be preached because of the assumption that the learner doesn’t understand right from wrong or the concept of God and His good story.  While merely singing songs and loving on students or our children is good intended and may well be appropriate for some, often the most growth comes from not placing limits on them and raising expectations for them in a reasonable way. I love to watch Jacob and observe for potential opportunities to teach him about God in a deeper and meaningful way.  Most importantly, we should never assume that God cannot work amazing things in and through people with cognitive differences.  Colossians 1:16 says, “For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him.” 

Just like when I share the Gospel with neurotypical individuals, I describe God, man, sin, Jesus, and ask if they want to make a decision to place their trust in God.  However, sharing the Gospel to someone with a cognitive disability can be more challenging if there are language barriers.  My son, for instance, thinks in a very concrete and literal way.  Therefore, I try to share the Gospel in a way that he can understand.  Just as we have Gospel tracts for children, I believe it is valuable to try and discover ways to share the Gospel to thinkers like my son. 

I like to keep a few helpful things in mind. First, I try not to overcomplicate things.  Just like when I modify curriculum for individuals with communication disorders, I make sure I use language that is easy to understand and direct. Next, I don’t discriminate based on cognitive ability.  Many people are under the assumption that individuals that are nonverbal or that have cognitive impairments can’t understand the Gospel, but that is absolutely not that case for everyone.  It is incredibly dangerous to assume someone is incapable of making the decision to live for Christ and the consequences of assuming are far too great.  I have seen many accounts where parents or caretakers are amazed to realize their children understand so much more than they ever thought possible.  Mark 16:15 says, “And he said to them, “Go into all the world and proclaim the gospel to the whole creation.” I trust the Lord’s goodness and grace with those that can’t comprehend, and I believe sharing the Gospel with all of God’s people acknowledges their value and dignity.  Last, I ask them if they want to make that decision to trust in Jesus and make Jesus the boss of their lives.  I continue to share the Gospel again and again and I pray for them before and after I share that God will open their eyes to His truth.
Sharing the Gospel doesn’t have to be a 30-minute conversation and it doesn’t have to be in a perfect ‘tract’ format.  I like to have a conversation.  Here is one example of how I would share the Gospel with a child like my son:

God is our creator.  Here look at your windchime.  Someone created this windchime.  That means they made it.  Just like you make silly videos on your iPad.  Well, God made us! But God is different than the person that made this windchime.  Do you know how?  God has never done anything bad ever.
Can you think of something that you have done that is bad?  What about when you hit your brother or when you threw a fit?  Those were bad things. The Bible says that everyone does bad things or things that God doesn’t want us to do.  You do, the person that made your beautiful wind chime does, and even Mommy does bad things!  Everyone does! But not God.
God has a rule about those bad things.  Those bad things mean that we can’t be with God now and we go to a very bad place forever after we die.  It means we are in trouble.  Mommy’s punishment for bad things is time out.  God’s punishment means not being with God forever.
But guess what? God did a very good thing for you.  He sent his son, Jesus, to take the punishment for the bad things we do so that we don’t have to get that punishment!
Jesus died on a cross and then rose up from the dead and that was the full punishment.  If you believe that and make Jesus the boss of your life and you can be with Jesus forever.  You don’t have to go to the bad place when you die, you get to be with God.  Making Jesus the boss of your life means listening to God.  Mommy can help you to learn about God by reading the Bible to you.

I want to encourage you not to underestimate your child’s/student’s ability to learn, understand, or accept God’s truth.  I believe God is capable of opening anyone’s eyes.  As we embark upon an Easter Sunday like no other due to the Coronavirus quarantine, wont’ you be faithful to share the Gospel with all people. I pray this Easter many individuals with cognitive impairment will come to a saving faith in Christ.

Monday, February 10, 2020

Night to Shine


On February 7th Woodridge hosted Night to Shine (NTS), Sponsored by the Tim Tebow Foundation.  NTS is a prom for individuals with special needs centered around God’s love for all people.  What makes NTS unique is that it is run by volunteers from all over, not just church members.  We had teens and adults from Humble, Kingwood, Atascocita, and even as far as Conroe come out to help.  There were volunteers from local auto companies, charity organizations, and even therapists/nurses came out to dance and karaoke the night away!

God tells us to love like Him and to share the good news with all and of course that includes individuals with special needs, but the world often forgets or neglects this population.  I see it as a special needs mom often.  Our kids, teens, and adults with special needs aren’t typically valued and honored in the way others are, and that simply isn’t God’s truth or desire.

 As the Special Needs Ministry Director, I was in charge of training the buddies for NTS.  Each buddy was assigned to hang out with an honored guest for the evening.  I noticed how some of the buddies were a bit uneasy at first.   I certainly didn’t blame them…differences can be scary, can’t they?  They wanted to do a good job, but were curious if they were trained enough, had enough gifts or talents, or if they were going to say the right things. Some had never interacted with individuals with special needs and were apprehensive. 

The night started out with people without disabilities talking to individuals with special needs, but it ended with barriers and walls being torn down and people simply talking to people. Everyone was dancing, singing, eating and laughing. That is God’s love-breaking the barriers of differences, abilities, backgrounds, and anything else that may be getting in the way to simply show people that they are loved and valuable to God.  Each is so valuable that while God is perfectly without sin and our sin separates us from Him, He sent his only son, Jesus, to live a perfect life so that He could take the punishment of our sin for us. When Jesus died on the cross and rose from the dead on the third day, He paid our punishment in full! He died for every single person, and that includes individuals with special needs.  Because He loves us, we love.  Because He gave His best for every single person, we gave our honored guests the royal treatment.  It doesn’t take anything special in and of ourselves to love and value individuals with special needs, it doesn’t even take a prom.  It simply takes a willing heart and God’s love.  

I know that our world isn’t where it should be when it comes to disability acceptance, but I saw bridges being built and barriers being broken down little by little that evening and it was truly beautiful.  Seeing God’s love being poured out simply took my breath away.  Thank you to all that came and displayed for me and for our honored guests this kind of love. 

Tuesday, December 10, 2019

Jacobs new school and new changes



Jacob has been attending his new clinic for a while now.  We have seen some incredible changes and some not so incredible changes.  For the last few months, they have been encouraging Jacob’s speech by giving him access to almost anything he wants if he uses full sentences…within reason of course.  So, if he picks up his books and asks to go do his work in a quieter room then they allow him to do so or if he asks to go see a specific teacher, they let him.  Because of this we have seen a dramatic increase in speech at home.  He still isn’t having conversational speech, but he is requesting things all the time with full sentences. 

There are still times when I ask about his day or how he feels and he looks at me and starts humming a song or he gives his usual answer and I wonder if he knows what I am asking or how to reply without the robotic “I am good, how are you” response.  We still aren’t sure how much he understands when it comes to things that aren’t concrete.  However, he does understand things like “go brush your teeth, hand me the soap, make your bed” and he listens to instructions very well.  He has even discovered his deepest love for the word NO. 
We are thrilled that he can tell people no and that he can tell us specific things about his day like when I asked him who bit him at school.  He couldn’t tell me that it hurt or made him sad, but he did tell me exactly who did it, and that was a huge win!  However, we have seen some unexpected behavior. Lately, he has been engaging in lots of stereotopy and hand flapping and imitating negative peer behavior since starting at the new school, including loud screaming fits.  He is typically a pretty chill kid, so this has been quite a difference.  He runs into the living room and jumps on my lap and yells silly made up words in my face over and over, which at first is very funny, but quickly becomes less than funny by the 100th time.  He screams when he goes into the bathroom for no reason and he uses his loudest voice to scream for things in the grocery store wondering why I am not caving to his every wish like the school is.  Sometimes it feels overwhelming.
It’s hard to remember to be thankful for the growth when the negative is so obtrusive.  While on vacation I finished a book called The Hiding Place and I was reminded of God’s call to be thankful in all circumstances, not just the good ones. 
"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:16-18
These women in a concentration camp trusted God so much that they gave thanks for fleas in their room before even knowing that those fleas would be what God used to keep the guards away.  It was so convicting to me.  Obviously, my situation pales in comparison to even a fraction of what these women went through, yet I struggle sometimes to see how much I have to be thankful for…especially when the roller coaster of autism is at a low point. 
In the book, when Corrie was unable to see how she could be thankful for fleas, her sister encouraged her.  When she was unable to see how she could forgive, her sister encouraged her.  Once again, I was reminded of how important Godly community is in my life.  Reading books like this, talking to my friends that pray for me and encourage me in Christ and leaning on friends from church means so much when I am struggling.  Pointing me back to the Lord and realizing that I am incapable of getting through this without Him is what I desperately need in my life.  One of my favorite quotes from Corrie Ten Boom was, “It is not my ability, but my response to God’s ability, that counts.”  In so many areas of my life, I feel I am not qualified, but God is.  If I am in His will, He will help me. 
I am so thankful for  my family, for Jacob, and for his autism.  I am thankful for my church and my friends.  I am thankful for this new clinic and Jacob talking so much more at home and becoming more expressive.  I am thankful he is saying NO more because that means he is expressing HIS feelings and not just what people tell him to think and do.  God is so good!
My prayer for you is that you find a community of believers to help you through life and to guide you back to Christ when times seem the most tough.  Even when you feel you can’t, try to give thanks.  There are ALWAYS things to be thankful for.  Allow God to give you a heart that genuinely beams with appreciation for all He has done.  


Tuesday, August 13, 2019

Numbered Pancakes


I decided to stop making numbered pancakes for Jacob this year.  I’ve made pancakes in the shape of the grade each of my kids are in for their first day of school for years.  It’s become such a tradition for my older son and daughter that they march right into the kitchen on their first day with huge expectant grins on their faces waiting to see their custom breakfast. 


  But for Jacob, I always just make his number and take a pic…knowing that he isn’t in that grade.  This year he would technically be classified in the 3rd grade (he's a summer baby). The closest thing we have to a “grade level” is at church where he just graduated the kindergarten class. We are hopeful that he will be able to remain in the 1st grade class.  It doesn’t have free time and the kind of structure that kinder did, so we still aren’t sure.  Jacob is super smart, but the idea of him growing up seeing these numbers that don’t apply to him made me sad.  Why have I continued to do that?  In my mind I have these silly expectations that really only bring heartache, all while I could be celebrating his unique talents.  

So, I made Jacob a big ole fat chocolate heart pancake this year.  A heart to represent how much we love Jacob just as he is.  A heart to represent how much we love his hard work and his silly personality.  A heart to represent that we will always accept him no matter where he stands educationally or how many milestones he’s met.  A heart to represent how much we love when he talks, sings, stems, and every other little thing about him.  A heart to show him that we can celebrate him just as he is. As he grows up and becomes more like the boy God created him to be and less like the boy I have envisioned or made up in my mind, I hope that I can continue to grow in my acceptance and understanding of him.  It’s not only ok that he doesn’t have a “grade” to fry up on the stovetop, it’s extraordinary.  He is unique and that’s something to celebrate!