Saturday, June 20, 2015

Keeping my "Pinterest Fail"

 
Let's admit it, we've all attempted a cute idea or two on Pinterest and most of us have had our share of Pinterest fails.  Well, this Father's Day was no exception.  I decided to spend a really (ridiculously) long time drawing with chalk all over our back porch to make a super cute card for Cret for Father's Day.  Believe it or not, this was our BEST take.  Half of Jordan's face is cut off, Tyler is doing I don't know what and Jacob refused to lay down.  I could feel the frustration coming on.  After many photos, I said to the kids, "Let's go in, this isn't working." 
Feeling a little more disappointed than I'd like to admit, I came inside to look at the camera one more time to see if I even got one salvageable picture.  I laughed out loud at the silly pictures I captured.  Then I was reminded...We are not a "Pinterest Perfect" family.  No one is!
How much time do we spend comparing and hoping for things other than what we are given? Its such a complete waste of time when you actually remember that God, the creator of the universe, in all HIS perfection and sovereignty and love created us just as we are for HIM. WOW.  I do not want to pretend to be a "Pinterest Perfect" family. I want to celebrate the family GOD created in HIS perfection.  
And on the topic of Father's Day, my husband works very very hard to provide for this imperfect family created perfectly by God. He has sacrificed many things to do what's best for our family and seek God's will and I want to give thanks to our PERFECT God for exactly how he created us.  He gave our family the PERFECT man to be husband and father to us! 
AND I want to show Cret that he is an awesome dad to this bright young lady, silly goofball and wild little boy, and what better picture to show that! 
I decided to fully embrace the Pinterest fail and I decided to LOVE it!
Thank you God for all that you have given our family.
Thank you God for creating each one of our children in your image.
Thank you God for their unique and wonderful qualities.
Thank you God for a husband who always works hard and NEVER complains.
Thank you God for a husband who notices when I need help and offers it without me asking.
Thank you God for a man who seeks YOU in our marriage and in fatherhood most of all.
HAPPY FATHER'S DAY to you, babe!
HAPPY FATHER'S DAY to all the excellent fathers out there!


Tuesday, June 2, 2015

10 Excellent Ways to Help A Special Needs Family

 
 
 
A few years have gone by now since Jacob's diagnosis and although the challenges are still there, I feel like we are more adjusted to our new way of life.  Things are crazy almost all of the time, but I can make plans now and sometimes keep them.  I can function without feeling completely scattered and I can reflect back on some amazing things that have helped me get through these times.  I can also remember some not-so-amazing things. 
 
I hear from many parents who's children have recently received an autism diagnosis and I can absolutely relate to the stress, frustration, fear and all that comes with it.  Friends and family ask you how to help, but you become so emotionally overwhelmed that you cannot even seem to form an answer, much less have the energy to ask for help.  So, here are my top 10 ways that people have helped me and I feel like it made a HUGE difference to our family.
 
 
1. Don't stare during meltdowns, strange eye movements or hand flapping, or when we have to turn our child's head to focus and speak in a funny way to them.  Rather, ask us questions.  Autism parents LOVE to inform people about autism because we LOVE the idea of people learning to accept and understand our babies.  Don't feel like there are any dumb questions either, asking questions translates to caring.
 
2. If you want to help with babysitting, sometimes it easier to babysit at our house.  People have offered to babysit my son, but don't realize that he will be highly agitated in a new environment.  Its hard to say, "Yes, but can you come babysit at my house?"  If you want to babysit, sometimes offer babysitting at the parent's house.
 
3. Offer a play date between your typical child and our children with autism.  This is an amazing way for us to teach our children social skills and for our kids to feel loved and accepted by their peers.  There is also an added benefit to your child.  You can talk to them about children with special needs and being understanding and accepting.  These are valuable lessons for all children.  Don't be scared that your child will mess up or say something wrong, trust me parents of children with autism are quite used to awkward moments and extremely forgiving.
 
4. This is a biggie.  Please be understanding when we have to cancel plans last minute.  Children with autism often have meltdowns that are hard to calm, have anxieties in certain places, and many other things can arise last minute. Be aware that there are simply some places that we won't even try to bring our kids.  For us personally, its places by lakes or pools (that we aren't swimming in) and certain places that one of us has to run full speed to chase Jacob the entire time.  BUT please don't stop inviting us places.  There may be that one day that we actually can get out and have fun and trust me, it will mean the world to us.
 
5. Don't pretend like they aren't there. Make sure you say "Hi" or "Bye" to our children with autism, even if they don't say it back.  In church, there are a couple women who make it a point to stop and look at Jacob in his eyes to tell him hi.  It is so unbelievably kind to me that they show him this respect and kindness. 
 
6. If you want to hang out, sometimes its easier to just come to our house.  My best friend often grabs some snacks at the store and just comes over to hang out with me and laugh and eat snacks.  She knows I can't leave Jacob much and is so considerate to want to spend time with me even when I can't go somewhere special.  This really helps me to unwind and feel like I have had some friend time without having to leave my house.
 
7. Please know that answering the question "Has he gotten better?" is a really tough thing to do.  Autism doesn't typically go away.  There is no known cure for autism. So for many families, some things get much better, while a lot of other things start getting worse.  Instead, you may want to ask how they are doing or if they have learned any cool new things lately.  Also, please don't avoid asking how our child is or questions about them for fear of an awkward conversation.  If your desire is to show that you care, asking questions is a excellent way.
 
8. Cry with us.  This is for our family or close friends.  There is a time to encourage, but you'll know and you'll see it in our eyes when we just need a good cry.  Don't say, "It's ok, don't worry." Because often that makes the person feel like they should suck it up.  If you can see they need to let something out, just be there.  Maybe just agree that its hard and let us get it all out.  Sometimes a good cry is just what the doctor ordered.
 
9. On the flip side, when we call you panicking about the time our child rubbed poop all over the window or when we had to chase our child through the house because they refused to put their pants on while the repair man was there, please be EXTRA silly and help us to laugh! This really is the thing that has helped me the most.  My best friend almost daily has to remind me of the humor in most situations I call her about.  Sure its super stressful and scary, but you either cry and panic about everything or you learn to laugh and just go with the flow.  I love being able to call her and know that she is going to make me giggle about the things I've gone through that day.
 
10. Please don't send us research studies or the latest heal-autism-quick advise.  Chances are we have already read it.  Autism parents become research experts and are ALWAYS reading studies and finding tools for our children...ALWAYS.  Instead, send us encouraging emails or prayers or feelings of concern, that really means the world to us.  Recently, after the wandering occurrence, I received a kind email simply telling me that someone has been thinking of us, and it made my day and I know I can say the same for my husband.  Autism sometimes makes you feel very isolated from the outside world, so notes of encouragement remind us that we are part of the outside world. :) There have also been people who have told my daughter how important she was and what a great job she was doing being a big sis. Jacob has some serious needs, so balancing attention is a VERY hard task.  Someone else showing her support made her feel very special and happy to get that acknowledgment. 
 
So, that is my advise.  It may not be exactly the same for everyone, but these things sure help us out a lot.  I know there are many friends and families out there hurting for their loved ones who are going through this difficult time.  I wanted to give them some practical advice to help.  Please share if you know someone who may need it.
 


Monday, June 1, 2015

Autism Service Dog

 
Having a child with autism is definitely rewarding, but it also comes with its share of difficulties.  Though I know it doesn't compare to having a child with a life threatening illness, or physical impairment, having a child that is prone to eloping is certainly scary and dangerous.  I wanted to share how our life looks with a child that is in constant danger from himself. No two individuals with autism are alike, and many children with autism do not wander.  In fact, the saying goes "if you know one person with autism, then you know one person with autism".  However, I suppose before I begin on the undertaking that I will describe below, I wanted to inform my friends and family about our journey and the steps we hope to take next because I know we will need support and because I want people to be compassionate towards families with struggles like ours.
 
As most of you know Jacob was diagnosed with autism early on.  He wouldn't engage with us.  The look in his eyes was blank and he just stared right through us.  He wouldn't gaze at us, he wouldn't imitate our smiles, and it was devastating.  Through intensive ABA therapy Jacob has learned to communicate on a simple level indicating his basic needs.  Only this year has he learned to follow our point to look in a certain direction, but he still does not grasp the idea that he can point to something he wants.  Though he is reading and counting at a level far beyond his age, many things are still lacking in his development.  The main things include understanding danger and communication.  For as long as we can remember Jacob has had the desire to run.  In the autism world, we call this elopement.  Elopement is when a child who is physically, mentally, cognitively or emotionally impaired escapes, wanders, or runs away unnoticed or unsupervised. 
 
Our life right now looks a little something like this (in terms of elopement only):
Each day we must deadbolt our doors to ensure that Jacob is safe inside.  We wear our keys around our neck because if Jacob were to find a house key, he would immediately take it to the door to unlock it and run out.  He has even watched me (without my knowledge) put the key deep down in my purse, waited patiently until I went to the restroom, climbed onto the counter and dug through my purse to get the key, and went to unlock the door.  Thankfully, I caught him.  When someone comes over, we have to remember to lock the door because even one mistake could mean life or death or losing him.  If he notices the door is not locked, he will bolt outside straight into the street.  We have alarms on the windows and doors so we can hear if he gets out, so for now he is pretty safe in our home.  However, out in the world, its a whole different story.  Jacob will be 5 years old this month.  He yearns for freedom and independence. When we go to the grocery store, he no longer sits in the cart or wants to be held.  He wants to walk like most kids his age.  When we allow him to walk, he drags his feet to try and get us to let go of his hand and then will take off running.  He will not walk beside us, so we can rarely take him shopping or out to public events.  If we do need to go somewhere my husband usually has to hold him tightly to keep him from getting away.  I no longer have the strength to restrain him for long periods of time while he hurls his body back and forth, so I usually have to leave wherever I am right away when the behavior begins.  It really limits where we go as a family.  Of course, sometimes he is perfectly ok playing a game on our phone and riding in a stroller, but as he grows, he is becoming less and less impressed with being confined and we want independence for him.  The other day, some sweet neighbors were all gathering outside in our cul-de-sac.  To be able to talk with them, my husband and I took turns.  While one of us spoke with the neighbors, the other one chased Jacob around as he ran from house to house to garage to yards.  My husband would give me "the look" and then we would switch.  This is regular life for us.  Its not something that we harbor resentment about, it just is our life.  This is why I have been searching for answers for us.  I have spoken with several moms who have kids who were bolters and the same is true for almost each family, the elopement doesn't end until the children are teens.  Yesterday, I spoke with Jacob's doctor and she agreed that this behavior typically gets worse as children get older and smarter. 
 
To be honest, I haven't seriously considered any help until now because part of me really thought Jacob would outgrow wandering. Autism is a strange thing.  Even with all that we know about it and all the research out there, no one truly understands autism.  There is no known cause or cure for autism.  The stories in the media of children who wander are devastating and tragic and my husband and I have this burden each minute of each day. 
 
After Jacob's most recent wandering event, when he snuck out of a building and ended up outside, a friend of mine contacted me about autism service dogs.  She said that she would be willing to donate money through her business to an non-profit organization for Jacob if he got accepted into a service dog program.  As I have read more and more about these remarkable dogs, I can't help but to hope and pray that Jacob will be accepted into the program.  We have officially decided to apply. 
 
My hope-I realize that a service dog is extreme.  A part of me keeps thinking that people will not understand our desire or need for a service dog because they do not understand the risks that Jacob has daily.  I have decided to officially not care about what people will think and to just go for it.  As my best friend told me when I discussed my hesitation with her, "If there was a pill for Jacob to keep him from wandering off you would give it to him in a second.  This dog is that pill. It will keep him safe.  It's a no-brainer."  Another friend told me, " Making sure Jacob isn't in life-threatening danger every second is what's dramatic, not getting a service dog.  Getting a service dog gets rid of the drama."  I also discussed it with his doctor and several dear friends who all seem to agree that service dogs really change lives.  Not only will the dog keep him safe from harm, it will be trained to find him if he gets out, help him with social abilities and so much more. This is a new treatment for children with autism and I feel that it will be life changing for our family and most importantly, for Jacob.  A service dog would keep Jacob safe, give our family freedom to the outside world, and give Jacob independence.  I wanted to write this to ask for prayers.  It's generally a very long process taking between 12-24 months.
 
Please watch these videos to learn about autism service dogs.  These are examples of families like ours and watching these videos brought tears to my eyes as I imagined the possibilities a service dog could bring to our family. 
 
 
 


Wednesday, May 27, 2015

Wandering


I'm still shaking. 
Words can't express the sheer terror when I heard those words, "We lost Jacob!". 
Frantically, we all ran around searching for him.  For some reason I panicked and didn't know what to do until someone screamed at me to run outside to look for him.
I froze. Why did I freeze?  What is wrong with me?
 Thankfully, someone else already had Jacob in their arms outside.  I turned and saw that the gate to the parking lot, the parking lot right beside the busiest street in town, was wide open.  I just started to sob.
It could've gone so much differently.  That is what kept going through my mind yesterday, last night, this morning.  He could've gotten lost or worse, he could have died.  It's my greatest fear.  And this isn't an unjustified fear. This is a genuine stressor that my family deals with each and every day, every minute that we have Jacob.  He has an insatiable desire to run off.  He is quiet as a mouse and is waiting for an opportunity and is smart enough to escape almost anywhere. He has no concept of danger at all.  He will run straight into a body of water, though he can't swim.  He will dart out into traffic, with no fear at all.  If we take our eyes off of him, he is gone. 

To make matters worse, I decided to go to Chick Fil A after (we have been there many times) and Jacob had a horrible time.  The kids were hungry and I wanted to just relax and wind down and let them eat and play. We sat down and immediately Jacob started feeling uneasy.  He started climbing all over me and pulling my hair and grabbing at my face. I took him to the restroom only to find out they only have automatic flushers.  He refuses to use automatic flushers.  So he cried and cried and wouldn't go, so we went back to try to eat.  He has decided recently that he doesn't like meat much, so he hardly ate and I took him to the play area where he began to push kids out of the way to get up to the slide.  Even though he is small, I can't let him push kids, so I told him calmly that we had to leave since he was pushing and he totally had a melt down.  He twisted and turned his body, melting and screaming out in the eating area. He was moving so frantically that I had to sit down on the floor with him in front of a filled restaurant to try to get him to look at me to calm him down.  He slapped me and wiggled and wobbled and I somehow managed to make it back to the bathroom to try and calm him down.  In the bathroom he decided he was absolutely desperate for brown soap (this is a container of hand soap at our house).  Of course Chick Fil A doesn't carry the Hill Family brown soap container, so I told him they didn't have brown soap and he yelled at the top of his lungs "I want brown soap" over and over all the way out to the parking lot as everyone stared. Then we went home and he didn't even want the brown soap and started on a running frenzy around the house. I had to go to the restroom and when I came out I found poop all over the entryway. Out came the bleach.

This is autism. These are the things that autism families don't often share, but need you to know because sometimes instead of judgmental looks we just need a "you're doing ok".  The best thing someone said to me after Jacob wandered outside was "Oh my gosh that is so scary, I'm so sorry".  I knew he was ok.  I was extremely thankful that he was safe.  I definitely didn't need to be reminded to be thankful.  Trust me, each time we make it through a wandering event my heart is so full of thankfulness it could explode, but to hear just a sympathetic "Man that is scary" meant the world to me.  Yesterday was hard, it was really stressful, and it really took a toll on me.  I can't remember the last time I cried so much.

Then I cried again today.
Through all of my heartache and tears, I couldn't help but to wonder what to make of all this.  Surely, it is not in God's will for me to live in fear and anxiety over this all the time, but I do have real danger lurking around every corner.  I'm sure most people can agree that your child being in danger is a far greater struggle than even your own life being in danger. So, does this danger allow for me to live in fear and anxiety, does God want my life filled with fear and anxiety? 
Does the Bible say that since I have a "reasonable" reason to be anxious and scared, that I am then allowed to remain this way? NO WAY. Absolutely not.  I have to give this to God and trust in His sovereignty.  It is ok for me to be prepared for Jacob's challenges, but to remain in fear and anxiety is the opposite of trusting and having faith that God is in control.
What is the common thread to overcome anxiety and fear?  Jesus. Leaning on Jesus, focusing on things of God and not of this world. Trusting in the Lord and knowing that the future is not determined or changed by my worry. Satan wants to steel my joy and I refuse to allow it.  My God saved my child yesterday so I will rejoice in the Lord for his protection and pray for continued protection for him, all while trusting that God is totally in control no matter what happens.  I got completely wrapped up in anxiety for a brief time, but I am choosing Christ, I am choosing to let the fear go and to just read God's word and trust it.

Here are some verses on fear, anxiety and faith if you are struggling with the same thing.

Philippians 4:6-7
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.
 One day he got into a boat with his disciples, and he said to them, “Let us go across to the other side of the lake.” So they set out, 23 and as they sailed he fell asleep. And a windstorm came down on the lake, and they were filling with water and were in danger. 24 And they went and woke him, saying, “Master, Master, we are perishing!” And he awoke and rebuked the wind and the raging waves, and they ceased, and there was a calm. 25 He said to them, “Where is your faith?” And they were afraid, and they marveled, saying to one another, “Who then is this, that he commands even winds and water, and they obey him?” Luke 8:22-25

16 Rejoice always, 17 pray without ceasing, 18 give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 19 Do not quench the Spirit. 20 Do not despise prophecies, 21 but test everything; hold fast what is good. 22 Abstain from every form of evil.
23 Now may the God of peace himself sanctify you completely, and may your whole spirit and soul and body be kept blameless at the coming of our Lord Jesus Christ. 24 He who calls you is faithful; he will surely do it. 1 Thes 5:16-24

26 Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. 27 And he who searches hearts knows what is the mind of the Spirit, because[g] the Spirit intercedes for the saints according to the will of God. 28 And we know that for those who love God all things work together for good,[h] for those who are called according to his purpose. Romans 8:26-28

12 So then, brothers,[e] we are debtors, not to the flesh, to live according to the flesh. 13 For if you live according to the flesh you will die, but if by the Spirit you put to death the deeds of the body, you will live. 14 For all who are led by the Spirit of God are sons[f] of God. 15 For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, “Abba! Father!” 16 The Spirit himself bears witness with our spirit that we are children of God, 17 and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him. Romans 8:12-17
 For those who live according to the flesh set their minds on the things of the flesh, but those who live according to the Spirit set their minds on the things of the Spirit. For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace. For the mind that is set on the flesh is hostile to God, for it does not submit to God's law; indeed, it cannot. Those who are in the flesh cannot please God. Romans 8:5-8

 for God gave us a spirit not of fear but of power and love and self-control. 2Tim 1:7

25 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life?[b] 28 And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not arrayed like one of these. 30 But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? 31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. 33 But seek first the kingdom of God and his righteousness, and all these things will be added to you.
34 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. Matthew 6:24-34

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.