Monday, April 13, 2015

10 Things We Want Our ABA Therapists to Know


We are embarking upon a new chapter in our lives.  This transition is definitely bittersweet.  We have decided to enroll Jacob into an ABA clinic that accepts our insurance and after a long waiting list period, he will be attending next Monday.  We are excited for this new journey, but with the change comes some sadness.  The therapists with Houston ABA that have been working 1 on 1 with Jacob will no longer be with him.  After coming to our home each day for years, they have simply become family and certainly are family to Jacob, so I wanted to list out the top 10 things that I really want Jacob's therapists to know. 
10. I know how stressful your job is and I am so thankful for human beings like you that work with special kids like Jacob and never let that stress show.
9.  Your enthusiasm with Jacob, your joy and laughter are contagious. No matter how you felt, if you were a little sick or sleepy, you always put on a huge smile and ran all around with Jacob just to help him and make him laugh. You are a superhero to us.
8. I am so thankful to you for never showing your frustration.  ABA is long tedious work with loads of data, data, and more data. Your never-ending patience is an amazing quality.
7.  Thank you for always being careful with my other kids.  They saw you coming in every day and often wanted attention or to tell you stories about their lives and you never blew them off.  You always took the time to make them feel important in that moment.  That kindness meant so much to us.
6.  I am so thankful for what you have shown me, my husband and my older kids regarding how to teach Jacob and how to play with him in a way that is both fun and a learning experience. What we have learned by simply watching you is worth so much.
5.  Thank you for not taking it easy on me, when you saw things I was doing wrong you called me out on it (in a kind way of course) and made sure I wouldn't keep making the same mistakes (ex. doing too many things for him that he could do on his own).
4.  Thank you for listening to me on hard days when Jacob was struggling with certain behaviors.  I bet you didn't know you'd be a counselor when you signed on to being a therapist. ;)
3.  If my husband and I could afford it, we would pay you a million + dollars a year, because that is truly how much you are worth to us.  Your work is absolutely priceless and one of the most important jobs in the world to us.  We never took you for granted and never will.
2.  We truly love you like family and I know Jacob loves you even more. 
1.  You may never know the impact that you have made on Jacob's entire life, our family's life, and our future.  The work that you have done with Jacob has completely changed him forever and has definitely given him a brighter future.  Through you we have seen Jacob learn to engage and smile at us, play with us, speak to us, call me "Mommy", say "I love you", learn to read, count, follow instructions. Without you, I don't know where Jacob would be.  This is truly life changing work and I hope you always realize how important your work is.


Thursday, April 2, 2015

My Daughter's Poem to Her Brother


Yesterday I was typing up my autism awareness blog post and my daughter, Jordan, came in and asked me what I was writing. I told her that I was writing a post to remind people to wear blue tomorrow (April 2nd) in honor of those affected by autism.  She asked me if she could write one to tell people how autism has changed her view of special needs, so of course I said yes. I love her honesty because it shows that parents need to be actively teaching their children about acceptance and being kind to individuals with disabilities. She is such a beautiful girl. Below is her post.



Today is Autism Awareness Day… and my birthday. My brother Jacob has Autism. I think it is so cool how God works in His amazing ways, and he decided to make my birthday on Autism Awareness Day.

My name is Jordan. I turned 12 today and my brother, Jacob, will be 5 in June.  It isn’t always easy having a sibling with Autism, but it’s not impossible either. When I first found out that Jacob had Autism, I was very young, and I didn’t quite understand the pain it would cause, but I also didn’t understand the impact it would have on my life.

I first started to notice something when my mom started telling me something was going on with Jacob. I was scared for him. I wanted my brother to just be like any other kid. I noticed he wouldn’t say my name. Jacob wouldn’t even say “Mamma” or “Dadda” to his parents either.

Since Jacob gets more attention, I used to feel like he is loved more. But he’s not. My mom loves each one of us equally as much, and that will never change. I would also sometimes be sad because I never wanted Jacob to be made fun of by other kids. That’s when I realized my whole life, until Jacob was born, I wasn't very accepting to people that were different. I decided from that day forth I wanted Jacob to remember me as the best big sis or “Sissy” he ever had.  I do this by trying to help my mom by babysitting Jacob when she needs to do chores or shower. I try to push him to do things. And most of all, I constantly pray for Jacob every day, and that is the best thing you can do.

Jacob has inspired me to look at those who are different as a blessing because it is the different people that change the world.

Jacob has made me laugh my head off at times and he is the reason my heart is thankful to God for those who are different.

God created everything and everyone for a purpose, including kids with autism. I wrote this poem in honor of Jacob:
      You make me make me happy on the cloudy days,
      You make me thankful for you in all your ways.
      When you’re happy, when you’re sad,
       Even when you’re mad,
      I will love you always, even ‘till the end of my days.
      God put you in my life for a reason,
      I know I’m blessed by you every day, every week, and every season.
      Thank you for being yourself,
      And nothing else.
I thank my mom for helping me out every step of the way, and I thank God for choosing to give me Jacob as a baby brother.

Wednesday, April 1, 2015

AUTISM AWARENESS

Autism.


 
Somehow I feel like I got initiated into the real world of autism over the last month.  Since his diagnosis we have journeyed through Jacob not meeting milestones, insurance problems, lack of speech, medical issues, therapy, hand flapping, eye stimming, etc. But I feel like all of that was nothing compared to the past month. To say its been hard is simply an understatement.  I am writing this because today is the beginning of autism awareness month. I know many of you have seen lots of the positive updates on Jacob's progress with speech and meeting targets in therapy. For the most part I like to focus on that, because what is the use of focusing on deficits?  However, tomorrow (April 2nd) is World Wide Autism Awareness Day.  Buildings and businesses like the Empire State Building, Tokyo Tower, China's Oriental Pearl Tower, One World Trade Center, Panera Bread, Home Depot and so forth will be "lighting it up blue" to help spread awareness for autism.  You've probably seen the special blue light bulbs in hardware stores and you'll likely see people wearing blue tomorrow to show their support.  I just wanted to encourage you all to share in this day with those of us affected by autism.  Simply wearing blue and posting online or donating to autism speaks through their website or by purchasing a blue light bulb does more than you think. Let me explain.

We love Jacob so much.  I always want to be very clear that we are very thankful for who Jacob is.  But, like all parents, we want him to grow to be able to help care for himself in many ways and to not be in danger all the time.  Autism is a difficult struggle for kids like Jacob and for families like ours.
 
We have had situations lately where Jacob has run out of the house full speed into the street when the front door wasn't dead-bolted, he has a hard time in most buildings dealing with the noise and if he doesn't have his headphones we have to leave, he constantly climbs and stands on high window seals, he slaps or bites people when upset, screams shrieking sounds in public, unbuckles and climbs to the front seat (while I'm driving), gets out of the stroller or grocery cart and refuses to bend his legs to get back in or dashes off super fast (then I am stuck in the store with a cart full of food and trying to wrangle him with me to the check out), he refuses to leave the trashcan alone, won't eat, and takes off his dirty diaper immediately when we aren't around to help clean and sits on the floor.  A horrible incident happened the other day when he ran into the bathroom and turned on the bathtub and locked the door.  I heard Cret yelling to me to grab the tool to unlock the door, that Jacob may be in the bathtub.  He loves water, but can't swim and likes the sensation of swallowing the water.  It's horribly frightening.  We opened the door to find that Jacob wasn't even in the bathroom, thank goodness.  He had turned on the tub and locked the bathroom and then ran into his brother's closet all within 2 minutes.  We have to remind everyone to keep the bathroom locked or to stare at him at every moment of free time. I have to be on full alert at every possible second in my home or he will climb up the pantry shelves or flip off the sofa.  He has this constant uneasiness and restlessness, though he is always pretty happy.  I sat with him in his Bible Study a couple weeks ago and watched as all his classmates listened attentively, participated and answered questions while he fought me every second to simply sit and constantly hummed and sang throughout the class.  I'm not trying to complain about these behaviors, but these are the things that are daily struggles in our home that many people don't see or realize.  We can't visit friends for dinner or even for a play date without someone constantly running after Jacob so that he doesn't slam all their doors or run out of their house. 
 
These and more are issues that parents with kids on the spectrum deal with consistently.  There is little help and support (mostly because people do not know how to help) and not a whole lot of understanding in the community.  People sometimes stare, judge, or give advise that makes us feel like we aren't doing enough.  We love our kids and learn to be care takers and are happy to do it, but it isn't easy.  Showing support to your friends and loved ones by simply wearing blue can mean the world to someone who may be going through a tremendously hard time right now.  Its a free and easy way to say that you care about spreading awareness.  Have your family wear blue tomorrow and tell them the importance of showing kindness to individuals with disabilities.  You may never know what that kindness will mean to someone who feels very different. 

 I know I speak for my entire family when I say that the loved ones who have come out to the Autism Speaks Walk with us in the past or who have worn blue on April 2nd really encouraged us a great deal.  I know there are many families out there that are struggling and do not share their journey publicly, but would also feel very encouraged by their friends participation to show autism awareness.

What is autism?
Autism is a series of disorders in brain development in the areas of verbal and nonverbal speech and communication, social interactions and repetitive behaviors.  It varies in degree of intensity for each individual on the spectrum. 

*There is no known cause for autism.

*There is no cure for autism.

*Many families do not have the means to get the help their children need to learn even the very basic life skills necessary to gain independence. To learn more about autism visit autismspeaks.org

So, if you know someone with autism, I just want to encourage you to simply wear blue tomorrow and send them a message or post on social media that you are supporting them in spreading autism awareness! Show them some love. It means the world to families like mine!

 

 2 Corinthians 1:3-4 ESV

God of All Comfort

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

 
 
 
 
 
 
 


Sunday, March 1, 2015

Running the Race



"Do you not know that in a race all the runners run, but only one receives the prize? So run that you may obtain it.  Every athlete exercises self-control in all things. They do it to receive a perishable wreath, but we an imperishable. So I do not run aimlessly; I do not box as one beating the air.  but I discipline my body and keep it under control, lest after preaching to others I myself should be disqualified." 1 Corinthians 9:24-27
 
Ouch. As I was reading those words the other day I was reflecting on my personal relationship with God.  It just so happens that I have been going through an immensely hard time in my life.  It was ironic that this passage was what I was reading...comparing Paul's work to advance the Gospel to a race.  I love how God speaks to us through His word and how relatable it is even now.  If anyone knows anything about my family we are in full running mode.  My husband runs marathons and I began running.  I couldn't help but to think about my life in comparison to a race. I sure feel like I am running a race with Jacob.  If you want me to describe my life as a mom of a child with a disability in terms of racing here it is....
 
The idea or thought of ever running seemed too hard to imagine, but one day I began to run.  I had heard many other's saying that even though running was difficult it was soooo worth it.  It was hard to see the good in running at first.  Running was incredibly hard when I started, almost brutal.  Sometimes I would have set backs, but I had to keep going.  Seeing results comes slowly...very slowly and sometimes not at all.  You set small goals and eventually you get there just to have to set more.  You meet other runners and make connections and realize that it is almost always more bearable to run with a friend, even though they can't totally understand how hard running is for you personally.  Eventually though, running becomes almost fun and simply the new normal for your life.  It is NEVER easy, but after a while, you realize it is worth the blood, sweat, and tears and you would never have it any other way.  You think about those other people who say they would never run or don't care to know about running and you know if they only had the chance they would love it, not because its easy, but because it opens your eyes to something you've never experienced.  Something that feels good, something that changes you. I still look back and sometimes think sure my life would be easier if I weren't a runner, but that's not my life and I am so thankful for that.
 
 I get that the act of running and being a special needs mom are totally different things, but the similarities were evident to me and I was thinking...man, I am in a race.  I am running a race for Jacob every day trying to get him to speak, just two little words, or trying to get him to stop standing on his head or sit still or eat a bite of food and eventually to mainstream and communicate.  It does feel like a race. So, how can I use this race to glorify God?  I don't want to be a runner running for no purpose and for no end goal.  I want to run the race worthy of receiving the prize.  I don't want to spit out advise and not take it.  For days I have been tormented about decisions I have to make regarding Jacob instead of seeking the face of God and praying for wisdom and guidance.  For that I know I need to ask God to forgive me and start running again for HIM! I need to seek every opportunity to share Christ with those in a similar race and know that God never promised for my life to be easy all the time, but that He is here to help me through anything and to give me peace.  To God be the glory forever.

Monday, December 29, 2014

Christmas with Autism



Christmas with Autism
For a while now Jacob’s sensitivities to certain sounds have been increasing.  So much so, that we have to leave restaurants and stores when he has an episode.  He covers his ears, lowers his head to his lap, shakes and cries.  Over the holiday I even had to leave in the middle of a nice dinner with my mom and sister and go have dinner in the car with Jacob.  I am so extremely happy and excited because this past week Jacob has finally allowed us to put his headphones on (connected to my itunes) and keep them on, so that he will stay in those places while we are there.  We have been working towards this for a long time and it is a MAJOR accomplishment that he is now able to wear them.  I am so thankful to God for this milestone, as some places are unavoidable and we needed a way to help him when he is having these episodes. Doesn’t he look so cute in those Spiderman headphones?  I sure think so!
 
So Christmas wasn’t the easiest this year.  The twinkling lights on the Christmas tree have always made me feel very nostalgic, I love winter and Christmas, but Christmas time is very different with autism.  Now, those glimmering lights remind me to be careful about where I place them because Jacob will want to grab at them and play with the plug to turn them on.  The once game filled, super fun Christmas Eve party at my family’s house is now my husband and I deciding who will take turns chasing Jacob around the house as he tries to open the front door, jump in the fish tank, and climb on top of furniture.  Staying until game time is definitely out of the question. Christmas Eve service at church is not an option with Jacob, so he must go into the nursery with the little kids and with one of us.  Christmas time is even more of a reminder of Jacob’s limitations.  As I am sure it is for the many parents who have children with autism at home, away from school for the holidays.  What was once a carefree, or mostly carefree holiday, is now a time of careful consideration of each moment...where we go and what we will do and how we will get Jacob through it.  It isn't all bad,  there are wonderful moments, but it can certainly be very difficult at times.
 
So how do you get through it?  How can you remain positive with so many challenges and changes?  My Pastor was describing the door knocker parable from the Bible in Luke 11:5-13 in which a person went next door in the middle of the night to knock on the neighbors’ door for food because they had an unexpected guest that was hungry.  The neighbor only answered after he continued to knock without ceasing.  My Pastor explained that we must pray in this way.  We must pray without ceasing, not for ourselves or desires, but to pursue God and to know Him.  He said that wisdom is not a commodity. Wisdom is a person (GOD).  When we pray to know Him more, we will get what we need: peace, wisdom, hope, patience, understanding, and help.
 
The wisdom of God can give us peace and calm amidst trials and struggles.  God doesn’t promise that we will not endure pain, but that with GOD, we can have REAL TRUE peace and joy.  I was reminded again throughout his sermon that the answer for how I can get through this time is right there in the Bible, the answers are always right there.  Seek and pursue God without ceasing.  Know HIM, love HIM, seek to honor and glorify HIM and he will give you rest and peace.
Christmas isn’t the tree or lights or parties, but a celebration of the one true king, our savior, Jesus, who was sent to us by God to reconcile us to God. 
 
God is perfect.  The Bible calls God holy.  Because He is holy sin cannot exist in His presence. 
We (man) are not perfect. We all sin. I have lied you have lied, I have lusted you have lusted, etc.  God says in the Bible that the punishment for sin is death or separation from God for all of eternity.  So there lies the dilemma between God and man. He is perfect and we are sinful so therefore we are cutoff from God for this life and all of eternity.  But God didn’t leave us there.  God loves us so much that He sent Jesus, his only son, to us to live a perfect (sinless) life so that all of our sins could be placed on him at the cross.  Jesus took the punishment for us that he did not deserve, and through his death on the cross, burial and resurrection, He conquered sin and death forever and paid the penalty for our sins in full in order to reconcile us to the Father if we believe and trust in Jesus.
We are in desperate need of savior to reconcile us to God. The Bible says that if we repent and surrender our lives and heart to Jesus and make Him the Lord of our lives, that we will be completely forgiven of all our sins by God, not because of anything we have done, but because of what Christ did for us on the cross.  Have you made this decision?  I urge you to surrender to the one true king.  Open your Bible and read through John.  See why we celebrate Christmas and Easter and why Jesus is so amazing. Pursue God and you will have peace and joy.
 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33
Romans 3:23
for all have sinned and fall short of the glory of God
 

Romans 6:23

For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord.
Romans 5:8
But God shows his love for us in that while we were still sinners, Christ died for us.
 
Romans 10:9
...if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.
Romans 5:1
Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ.

Friday, November 21, 2014

THANK YOU GOD


Sweet little Jakey-poo is really growing up! Man I can't believe how far he has come in such a short time.  When I reflect on what he has learned in the last few years it sounds like he has been in therapy forever and he is only 4! Since I am always in a panic about all the things he still needs to learn, communication areas of need and safety issues I wanted to just stop and write a post to just THANK GOD for all the things God has done in Jacob's life this year. The list could go on for ages, but these are the biggies. This time next year I want to compare yet again how far Jacob has come.
 
Within the last year or so...
 
Jacob has learned how to say "Mommy and Daddy" he also recognizes and can label mostly all of his family members, but he occasionally even requests me or his dad!
 
Jacob looks at us in our eyes when we sing and play.  He is engaged! (Not all the time, but so much more than we could have ever dreamed)
 
Jacob can not only identify all his letters, but he is now reading! WOAH He can read sentences like...
The girl is cooking
and match it with a picture of a girl cooking, even when presented with other similar pictures to distract him.  He has mastered out of his first reading level and about to get past the second level as well.
 
Jacob can follow directions! He has mastered simple 2 step instructions like pushing his chair in and going to the bathroom and is currently do well in his 3 step instructions.
 
Jacob knows how to recite his address and phone number.
 
Jacob can count to 100 and will give you a certain amount of objects you ask for (most of the time, when he is paying attention)
 
Every time Jacob sees the computer he either requests me to play the "Thrive" song from Casting Crowns or another song that's on his mind.
 
Jacob can drink out of a regular cup without pouring the drink all over his body on purpose anymore and he eats with a fork...sometimes.
 
Jacob is pee peeing in the potty! Still working on the rest.
 
Jacob will say, "I love you, too" when Cret and I tell him we love him.
 
Jacob can write his name and other letters and he can draw a car, butterfly, and several other things.
 
Jacob can request certain foods he likes, toys, and to go play outside.  Jacob can ride a bike with training wheels independently. 

Jacob has finally learned how to say "no" and knows the proper time to say it.  Up until a few weeks ago he answered only yes to everything.

Jacob knows over 500 nouns and verbs and can identify them in the real world most of the time if you ask him what that is (still working on asking him what someone is doing or what he is doing). 

Jacob is head over heels in love with Mickey Mouse and he has finally learned how to dance! Here is a video to prove he's got moves...

video
 
 
These are only some of the simply remarkable things that God has done in Jacob's life.  We are so very thankful and God is so good. 


Tuesday, October 28, 2014

Fear

This past weekend I was invited to sign books at the Texas Book Festival.  It was lots of fun and I got to tell many people about my book.  It was an awesome experience and I loved hearing encouragement from people agreeing about the importance of teaching their children to value all people. 

On the way home I had a long discussion with my sister-in-law (who so kindly took time out of her busy life with 4 kids to come with me) about Jacob and our lives.  I told her that if I were writing a book about our family life and how autism has impacted us and what God has done for our family, it would include miracle after miracle. God has truly done some amazing things through this autism journey and we aren't even that far along in it. When we reflect on those things, we simply are in awe of HIM.  God is so good.

However, despite all the things God has done, I keep trying to rely on myself.  I always feel like I could be doing more.  Life feels exhausting all the time.  Why?  I just know the root problem is fear.  I am so fearful of losing the ones that I love.  To make matters worse, I have a child who bolts, would run out of the house at full speed into the street, would dive straight in to any body of water, and who doesn't recognize danger.  Not good things for any parent to try and manage, especially me or "safety patrol" as my family calls me. I am overly protective by nature and with Jacob, you could probably say I am simply ridiculous. 

FEAR

Why do I remain so fearful if I trust God?  It really makes me think about my faith and my understanding of who God is.  Often times I read those stories in the Bible: Adam and Eve, the Israelites, and I think, " I would never sin like that or choose to not trust God if I witnessed those miracles".  Yet I am doing it right now in my life.  Instead of trusting in the one who gives life, I am fearful.  And what can my fear accomplish for me?  Let's see...It steels my joy, it makes me anxious, it takes time from my life in which I could be having fun and it hinders my relationship with God. What can't the fear do?  It can't stop God's plan.  It can't help me.  It can't add one day onto my life.  It boils down to another simple choice... Trust God or trust myself.  Fear and a lack of trust cannot accomplish anything good. The Holy Spirit can accomplish much when we live in surrender to Christ.  So I need to surrender myself and rededicate myself to God daily. That means placing my trust in Him through any situation and allowing him to use anything in my life to glorify himself.  How can I be used if I am living in fear?  What witness am I if I am constantly anxious or irritable or stressed?  If we are supposed to do all things for the glory of God, I know that includes my parenting and more specifically how I handle issues in regards to autism. No, I am not perfect.  That makes me laugh to even write that, but I always write my heart and my desire to honor God with everything in me, but man I screw up... However, I will never stop trying to honor God in everything and I need to try to surrender all areas of my life to Christ.  Sometimes I don't even realize that I am relying on myself until the burden is too heavy.


Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.  For my yoke is easy, and my burden is light. Matthew 11:28-30
 
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.  Isaiah 41:10
 
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.  Philippians 4:6-7
 
For God gave us a spirit not of fear but of power and love and self-control. 2 Timothy 1:7

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13