Thursday, June 22, 2017

Jacob's Gift To Us


Today is Jacob’s 7th birthday! I can’t believe how big he is and how far he has come.   Over the last year we have seen him learn piano, addition, engage with the boys his age and so much more.  It has truly been a blessing.

The last two weeks, however, have been pretty difficult for him.  Jacob has selective mutism, an anxiety disorder in which he goes completely mute when he’s nervous.  The clinic has begun a tolerance program to help with his mutism.  They are having Jacob speak in each room in the clinic because he only wants to talk in certain places.  It was going well in the beginning until they got to a room that was especially loud.  Jacob hasn’t spoken for days since they started in that room.  Meanwhile, other negative behaviors have increased.  When we show up to pick him up at the end of the day, they won’t allow him to leave until he simply utters a sound like “sh”.  He has been acting out at home and his verbal stemming is becoming extreme.

Many times, when kids with autism are trying to overcome a difficult task, it gets really bad before it gets better like a roller coaster.  Yesterday, he was having extremely bad tantrums and screaming and kicking me.  It’s been making me feel so sad for him and discouraged.  But God, in his awesomeness, provided another amazing opportunity for us to see how God is using this all for His glory.

When Jacob was first diagnosed with autism, he wouldn't talk, make eye contact, or play with Jordan.  It was hard for her.  She realized she would have to talk to Jacob differently than other kids. We hired therapists to come to our home and they worked for hours with Jacob in his room.  I remember day after day Jordan would sit at the door and listen to the therapists doing their work, so she could learn the ways she would need to talk to him to get his attention. When the therapists would leave our house, she would copy all the things they were doing and eventually got Jacob to talk to her.  Still to this day, she uses methods that the therapists use to engage him.  It’s truly a beautiful thing to watch.

Jacob has taught her that she must be smart, kind, and patient with kids with special needs.  She has to treat them with respect and be as silly as can be.

Yesterday she was volunteering with our church for Backyard Bible Clubs. They were playing games with the kids when I noticed a family swinging on the playground. I told her to go and invite them to the club.  When she did, the dad said, “I'm sorry, but my son has Autism, and he doesn't do too well in crowds”.  Of course, this was not a coincidence.  She said that she completely understood and that her brother had autism, too.

Later during music and dancing time, the dad and his son showed up, so she jumped right in to talk to him just as if she was talking to Jacob.  He was sitting in his father’s lap, repeating over and over “Excuse me! Excuse me! Excuse me!” so she said, “Hey buddy, what do you need?” The dad, with shock in his eyes, said to his son, “Look, you got her attention, talk to her” and she and the little boy started talking to each other like they were long lost friends.  They were dancing to the moves of the worship songs and the boy even added some crazy moves of his own, so she did that with him.

At craft time, he took her hand and walked over to that area leaving his dad behind.  While they worked on it, he sat in her lap and gave her a huge hug.  The boy’s dad was crying and said, “I think this is the first time he's ever talked to a stranger”.  After club was over and he took his son home, he even came back out, sobbing, shaking her hand saying thank you so much.

I am so proud of how she treated the little boy.  Isn’t that how we should treat everyone?  With respect, with dignity, with love, with compassion.  I love that they got to hear about the Gospel while feeling genuine kindness from a stranger.

Jacob has taught us all to be a little more patient and silly and kind. He has taught us not to judge those who are different but to treat them with respect.  Even my sister said that when Jordan came up to her quietly to let her know that the little boy had autism, instead of being fearful or uneasy she was ready.  She said, “Because Jacob is who he is, we aren’t scared when others are who they are. Being around Jacob a lot has made us all ready to accept people just as they are”.  Jacob may not realize this, but by just being himself, he is changing people.

I’m so thankful for all the silly moments and the difficult moments.  I’m thankful for the times we must totally learn new ways to do old things and the times when there’s nothing we can do but to pray.

Jacob, you are such a sweet blessing to so many.  You are very loved for just being you.  I pray one day all the stories of how you changed people’s lives will touch your heart.  I pray that you will have a deep and rich relationship with the Lord and use all your struggles and successes to bring Him glory.

Happy birthday Jacob! Thanks for being you!



Friday, June 16, 2017

My son jumped into a boat filled with water, you won't believe what happened next!



You’ve probably seen some of the viral posts about hairdressers going out of their way for children with autism and sensory difficulties.  They cut their hair on the floor or they go into their car to cut it.  Or how about the waiter that stood up to bullies being mean to an autism family because their child was a little loud?  Today, I read an article about an airline worker who helped an adult with autism who was having a meltdown.  These posts resonate so much with me and I know they do with others as well.

  As an autism mom, I see the unsympathetic or pitiful way people look at my son when he is wearing headphones or flapping and making strange noises in public.  Sometimes it can be hard and uncomfortable to be around a child that you may not understand. Working with them is no different.  Doing things outside of the “norm” isn’t how we are trained to behave, right?  In school and in work, we do as we’re told.  So, those few and far between people who go out of their way to do something “unique” for someone else are truly special. 

Our swim instructors are just that. Unique.  Coach Matt and Coach Kelley have shown compassion and patience with Jacob.  They are open-minded and willing to adapt to the needs of the kids they work with. Teaching Jakey to swim has been on the top of our priority list, but his resistance to learning, matched with the incredible dangers of a deep pool, have been huge setbacks for teaching him. 


Recently, we found a unique place called Captain Swim Navy in Humble that offers swim lessons in a boat shaped pool that adjusts to the child’s height.  It offers a safe and effective way to train all kids to swim.  But more than that, when I called, Coach Matt said that he WANTED to help kids with autism and asked me to bring Jacob in.  In fact, he was even open to being trained by Jacob’s ABA therapists to better understand how to work with kids with autism.  Although each child is different, he went out of his way and adjusted his teaching methods for Jacob.  Coach Matt and Coach Kelley even learned how to use a picture schedule and token system for him and other kids that need it.   

These are the kind of people that may not even realize what a difference they are making in the community and for autism families.  I want to challenge you to think outside of the box the next time you encounter a child with autism at your workplace or in the community.  Be the one who is causing a stir because of your compassion.  Be the one who refuses to conform to how everyone else is responding and instead stepping out to be a change-maker. 

I am so thankful that someone has done this for Jacob.  In just a few weeks, he has learned how to float and hold his breath under water for quite a while! Through some innovative and hilarious techniques, Jacob has come much further than we ever expected.  He wasn’t wanting to put his head in the water while doing the alligator crawl, but a mirror did the trick.  He just wanted to see his own beautiful face. What a stinker. I know he will be swimming soon. 

Many people may not know that drowning is the leading cause of death in children with autism.  If you haven’t started considering swim lessons for your child, I urge you to call around and find somewhere.  If you are a swim instructor and interested in working with kids with autism, but don’t know how, contact a local ABA Therapy company and ask for training.  Many companies want to reach out and help the community so they have a place to recommend for autism families.  Let’s join together to make this world a bit safer for our kids with autism!

video

Wednesday, April 26, 2017

An Invisible Disability

The other day, while out in public, Jacob decided he wanted to hang out without his headphones on. I thought to myself that it was great that he was trying to cope with the sounds.  But after a few minutes he started moaning and making his usual "unusual" noises and hand gestures and people started looking.  It made me a little self-conscious and I realized that his headphones often indicate to people that he is different.  Different is ok and people are usually understanding when they know that he is different.  But then I started thinking about when he is a teen and making noises and flapping...what if he is totally done with his headphones by then?  When people don't know he has a disability they often just stare at him like he is an alien.  It's such a shame.

I was recently in a situation where I got to see some typical boys and girls interact with a boy who has obvious signs of high functioning autism.  I saw the way they ignored him, the way he was left out of the group, and the way they laughed at his unusual manner.  It absolutely broke my heart.

I wonder how we, as parents, can help this situation?  Will it always be so awful and lonely for kids with these invisible disabilities?

I think the situation just stressed to me the importance of embracing who God created my children to be.  If our kids have autism or any other invisible disability, it can be tempting to hide it.  For a while that works well, right?  You teach them to cope, to hide, to act "normal".  But after a while, people discover that they are different.  How do we then go on and tell them their differences are ok after making them hide it for so long?  I am not saying to stop encouraging and teaching them to be appropriate, courteous, and kind, but the fact is....autism is a social disability.  It affects the way individuals engage with people.  We need to teach our kids that their differences make them unique and they can embrace those differences for the glory of God.  How can their strengths be used to honor God?  My son is a super memorizer.  I hope we can encourage him to use those skills for scripture memorization, perhaps. 

Also, it's important for us to not back away from being open about disabilities.  Sometimes in our community, kids who presume our children are typical (just acting odd) can be flat out mean.  When I think about this, I don't even blame them sometimes.  Picture a kid with high functioning autism following a classmate around very close and talking to them about their hair over and over (true story).  That is odd behavior that would naturally make a peer scared or uncomfortable.  However, if that peer knew that they had autism maybe they would have compassion and be more understanding. 

I was so happy to see the new clip of the Sesame Street character who has autism.  In the clip, they announced that she loves when people know that she has autism.  I am so happy that they are encouraging people to not only disclose their diagnosis with others, but to be happy to share it because that is just a small part of who God created them to be.

I know as Jacob grows, if he becomes high functioning, it will be tempting to pretend things are "normal", especially around peers.  But as I have read and seen time and time again, the truth comes out in sad and lonely ways.  I am praying for God to give us wisdom in how we handle this and my hope is that we can help Jacob to see that having autism is ok and, more importantly, it doesn't define him.  There is so much more to Jacob than autism.  He is silly, smart, the master problem solver, and such an amazing kid.  I hope he can embrace all those things and never feel like he has something to hide.  I also hope and pray that parents of typical kids teach their children to be kind to kids that act unusual.  If you aren't having those conversations, your kids will not automatically know how to treat them...especially if their disability is invisible.  Like any special needs parent, my prayer is for my child to be treated with kindness.

Thursday, April 20, 2017

Insperity Sports Complex



Our family loves sports, particularly baseball.  My husband always watches baseball on tv with the boys. Jacob loves to imitate the baseball players.  He winds up with a high knee to pretend to pitch like the pros and, of course, he watches them go out and grab the dirt and lick their fingers to get a grip of the ball. So last season to start the first game for the miracle league he gets all his gear on and runs out to the pitchers mound and grabs a huge chunk of dirt and licked it right up.  He quickly found out it wasn’t as cool as he thought it was gonna be.
In all seriousness though, the Miracle League has meant a lot to our family.  For my husband, it has allowed him the opportunity to see my son participate in a sport and enjoy doing something that couldn’t do otherwise.  It’s a good challenge for Jacob.  But the best thing is that they get to bond over something they both love. It sort of brings their worlds together.  As a coach, he would always say that no matter how bad  his day was…just getting to see the pure joy of those kids' faces out there playing and running the bases changed his perspective and made him appreciate the little things. It’s impossible to have a bad day after watching the kids light up on the field. You get to see families encouraging each other and meeting other families in similar life circumstances. 
My daughter gets a chance to be a buddy and help kids out on the field and I've seen how fulfilling its been to her and it increases her compassion towards children with special needs.  Tyler loves watching his brother enjoy the sport he plays and having something in common with him.
And I love that we can bring Jacob out to play baseball, but if he feels like rolling in the dirt, swinging the bat, or swinging from the fences, there’s no judgement. Its just a safe place to have fun and play sports where kids with all different abilities are accepted and included.
Most importantly, we are thankful that the Miracle League sports offers Jacob the unique opportunity to learn what it means to be on a team, to share, to wait his turn, to learn the rules of sport and meet his own independent milestones. 
Our family is truly thankful for the opportunity to have somewhere Jacob and other kids with disabilities can go and enjoys sports.
The Lake Houston YMCA has teamed up with Humble ISD and community partners like The Houston Astros, Insperity, The Houston Rockets, Texas Children's Hospital, and Halliburton (to name a few) plus many families to build a fully adaptive sports complex and playground in Atascocita.  This is such a special and unique way for the community to come together to build a facility for individuals with special needs and show their support and acceptance. 
Tonight our family got to speak at the grand opening of the new Kingwood Insperity building for a fundraiser for the sports complex and we couldn't be more thankful.  The Miracle League has truly been a blessing to our family and we know that this sports complex will be so amazing for so many for years to come. Please pray they raise all the funding needed.


Wednesday, February 15, 2017

Jacob is listening

"Children with autism are very observant so they will notice everything, including your attitude toward them." -Trevor Pacelli

I got an email today from Jacob's BCBA that had me in tears.  It read:

"Hi Allison!

I wanted to give you a few updates on some happenings of the past few days with Jacob. On Friday two of his peers switched places so he had a new person in his room. Of course with this being new and unexpected he had some difficulties and he refused to speak. However, as it was the end of the day (around 3PM) I sat down with him for a "heart to heart." I explained that he had a new friend in his room and I know that's scary so he doesn't want to talk around that new friend. I told him that was okay and I understood he was not very happy with the change and I apologized for not telling him earlier. Then I told him that he didn't have to talk for the rest of the day (his therapists just did receptive programs), and he could have the weekend to get used to it and think it over but on Monday I would expect him to be good to go and talk with his new friend in his room. And lo and behold yesterday morning he was perfect! Obviously I cannot say that the talk with him worked but I thought it was at least cool and wanted to mention it ☺ He has been fine and has not engaged in the mutism due to that friend since! Also, yesterday with Valentine's Day I had him go with his therapist and walk around to each of his friends and hand out a valentine to each. He did AWESOME! He handed out each valentine appropriately..."



First of all, I am so excited that he enjoyed Valentine's Day.  I'm glad his clinic is showing him how to be a friend and share.  Secondly, I am thrilled that Jacob overcame his fear! Jacob gets very nervous in certain situations.  He refuses to speak while we are in the car or at certain places, even if I am offering him his headphones or candy or something extremely desired.  Selective Mutism is his way to deal with the intense stress of noises or change.  He won't say a single word for hours (or days at the clinic) not even a yes or no.  Typical treatment is counseling, but he is still unable to hold conversations with people.  His language is still pretty basic.  He can ask to play outside, or for a drink, but he does not engage in back and forth conversational speech.  Because of that, I realized that sometimes I don't fully explain situations to him.  I don't know if this pep talk from his BCBA worked or not, but I cannot assume that it didn't.  Its been proven that many individuals with autism understand so much, they just can't communicate what they have to say.

This has really encouraged me to describe situations clearly and to do more for Jacob spiritually, as well.  Though he may not understand everything, I need to be constantly pouring God's word into his heart in a deeper way.  I need to continue to share the Gospel with him and also read scripture about his anxiety and trusting God.   Regardless of what I think he may be understanding, I need to talk to him as if he does understand.  I need to show him dignity by speaking to him in a way that is not babyish and that is respectful and intelligent. 

Please be praying for me as I try to parent Jacob.   I know I am not alone in this. Other autism parents are also trying to raise their growing children unaware if what they are doing is working or appropriate.  This is totally new territory for me and so much is unknown.  It’s hard not being able to hear from him regarding his fears and needs and understanding, but I have faith that God will guide Cret and I and give us wisdom as things comes up.  I am so thankful for Jacob and the special bond we have.  I am so thankful that God is teaching me new things everyday through parenting.  God is so good. 

Sunday, January 22, 2017

Sanctity of Life Sunday and Special Needs



Sanctity of life Sunday is a special day to me for so many reasons.  I am pro-life.  I am pro-life for the unborn, born, elderly, immigrants, people of all religions and races and individuals with special needs.  Many say that they are pro-life, but typically only think of pro-life in terms of abortion.  For so long the lives of individuals with special needs have been undervalued, unappreciated, deemed worthless in some countries and areas and un-discipled.  Today, on sanctity of life Sunday, I wanted to provide some tangible ways to support the pro-life movement and to show respect and dignity for the lives of individuals with special needs.

1.      Have you spoken with your children about how they treat individuals with special needs?  If you haven’t, please consider speaking to them.  Naturally, children are curious and scared of what they don’t know.  Often when they are scared, they lash out. What a gift to teach your kids compassion and empathy.  Their kindness may be the only time that person is treated with dignity or feels a sense of friendship.  Teach them to show the love of Christ to all. ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’ Matthew 25:40

2.      When you are out and you see a special needs family, give them a warm smile.  You’d never imagine how far simple kindness can go.  Show them and especially their special needs children respect and understanding even in those awkward situations that are loud or disturbing. ‘Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind.’ 1 Peter 3:8

3.      If you know a special needs family, encourage them or offer help. It’s not always easy living in a different world.  As a special needs parent, my eyes have been opened to a whole different world.  A world where my child cannot use most public restrooms, a world where we must ensure that we have the very best headphones when we go out or my son cannot function, a world where he gets awful stares by people wondering why he is kicking me or throwing my purse on the ground in a fit because he cannot speak to tell me what’s wrong.  I live in a world where we have to deadbolt ourselves in our house so my son won’t get out and run into traffic or a pool or simply just away from safety.  That world often makes you feel isolated. I am fortunate to have a family that supports and loves on us, but many are not.  We need to support these families and encourage them.  Could you possibly offer to babysit?  Could you offer a kind word of encouragement to a sibling that maybe feels left out?  Could you offer a meal or simply a time to come and allow that person rest? ‘Let brotherly love continue.  Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares.’ Hebrews 13:1-2

4.      Most importantly, those in the church, please do not forget to pray for and disciple these individuals with special needs.  It has been proven time and time again that even children that cannot speak and seem to have a low IQ, can understand what you say.  Let your words be kind, but more so share the Gospel with them! We cannot assume that a child or adult of any age or disability cannot accept Christ.  Doing that is doing them a great and dangerous disservice.  Share the Gospel as many times as you can with individuals with special needs.  Hope in Jesus and salvation is that person’s greatest need.  I love reading about when Jesus forgave the paralyzed man in Mark.  Though he was paralyzed Jesus knew that his ailment was a temporary hardship, but his forgiveness was his need for eternity.  It reminds me that when I pray for Jacob his salvation should be at the forefront always, not his safety, not his healing.  That is his eternal need.


Mark 2:1-12English Standard Version (ESV)

Jesus Heals a Paralytic

2 And when he returned to Capernaum after some days, it was reported that he was at home. 2 And many were gathered together, so that there was no more room, not even at the door. And he was preaching the word to them. 3 And they came, bringing to him a paralytic carried by four men. 4 And when they could not get near him because of the crowd, they removed the roof above him, and when they had made an opening, they let down the bed on which the paralytic lay. 5 And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.” 6 Now some of the scribes were sitting there, questioning in their hearts, 7 “Why does this man speak like that? He is blaspheming! Who can forgive sins but God alone?” 8 And immediately Jesus, perceiving in his spirit that they thus questioned within themselves, said to them, “Why do you question these things in your hearts? 9 Which is easier, to say to the paralytic, ‘Your sins are forgiven,’ or to say, ‘Rise, take up your bed and walk’? 10 But that you may know that the Son of Man has authority on earth to forgive sins”—he said to the paralytic— 11 “I say to you, rise, pick up your bed, and go home.” 12 And he rose and immediately picked up his bed and went out before them all, so that they were all amazed and glorified God, saying, “We never saw anything like this!”

Tuesday, November 22, 2016

Thankful for AUTISM


It’s easy to feel discouraged as an autism parent around this time of year.  Let’s face it, taking our kid’s to other homes with different food, different schedules, and different people around, doesn’t exactly lend itself to an easy holiday when autism is involved.  While others are enjoying relaxing vacations, our son being out of school often looks a bit like a circus.  Just in the last 15 minutes, my son has pulled his mattress out into the hallway, pulled all the wet clothes out of the washer on to the dirty floor, taken off his pants (still can’t find them) and slammed every cabinet in the kitchen.  Full days without school are challenging to say the least.  But this year, I am refusing to let it overwhelm me.  There is so much to be thankful for and not only that, there is even so much about AUTISM to be thankful for.  So, I decided to make a list of all things AUTISM that I am thankful for.


1.       I am thankful for all the giggles Jacob gives our family when he does things my other kids don’t have the guts to do. For instance, when I sing sweet nighttime songs to them, he walks up to me and pinches my lips shut really tight and tells me to STOP.  Everyone laughs.  I’ve never been a good singer.

2.       I am thankful for Jacob’s unique and silly personality. 

3.       I am thankful for how Jacob is so ultimately snuggly. 

4.       I am thankful that autism has opened our family’s eyes to the world of disability.  It has made us more sensitive to others' needs. 

5.       I am thankful that autism has challenged us to work together as a family to come up with ways to help Jacob and meet his needs.  When one is on cleaning duty the other is watching Jacob.  When someone is bringing in groceries another person is guarding the front door.  When Cret and I are outside with Jacob, we stand at opposite ends of the street to keep him from running.  While those sound like chores, they actually are pretty sweet.  We all have this responsibility to keep Jacob safe and it brings us very close to one another. 

6.       I am thankful when our family comes together as a team to help raise money or awareness.  Each of the kids in the family, even extended family, wants to find cool ways to help.  It’s a special and unique bond.  Also, it led to Taylor Swift helping our family get an amazing service dog. That was pretty unbelievable.  We can't wait to meet our new furry friend.

7.       I am thankful when I see my kids explain autism to others.  It’s pretty cool to witness a young child trying to teach inclusion and compassion. 

8.       I am thankful for the challenges that my husband and I have had to face together.  It has brought us closer to each other and closer to the Lord.

9.       I am thankful for the times that I just couldn’t do it on my own.  The times I felt broken.  It made me see very clearly how completely desperate I am for the Lord. 

10.   I am thankful for the friends and family that have helped us and shown us love in unimaginable ways.

11.   I am thankful that I have a better appreciation for the small things, like new words, eye contact, pointing, brushing teeth, drinking from a cup, sitting in a chair for a whole meal…things I most certainly took for granted before. 

My life is better with Jacob and AUTISM.  That doesn’t mean I don’t have hope for him, it just means I sure feel blessed right now.  Sometimes I just need to remember to choose joy and thankfulness.  Thank you, Jesus, for this life.