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.

Thursday, October 27, 2016

Changing my plans

STRESS is the word of the day.  Jacob’s behaviors are increasing big time.  He is still learning and growing in some marvelous ways, but he is also becoming more defiant and harder to manage in public settings.  By manage, I just mean like sitting down at a table without getting up 10 billion times to open doors and slam things.  He refuses to let me take him into the kitchen in the morning to eat.  He won’t leave the house without the specific color headphones he wants that day, and heaven forbid I try to get him to wear his nice new red tennis shoes.  He is back to slamming all our cabinets and doors and he desperately wants me to sing him Christmas songs while he cries.  I don’t like him crying so I refuse to sing them…which also makes him upset so he sings the songs crying.
We recently visited a new neurologist and he ordered an EEG
and DNA testing and we finally got it done!  He said many people with autism have epilepsy and don’t realize it and once it is treated it can greatly improve symptoms of autism.  I would be shocked if Jacob was having seizures, but we completed the test and will have results soon.  Additionally, the first DNA test (CMA) came back completely normal.  It’s so strange, but the results made me sad and a little disappointed.  His doctors thought it would likely come back with answers, but it didn’t.  It’s weird to think I would want a genetic reason for his autism, but the truth is that now we are back to square one.  AUTISM is a big, huge, gigantic mystery.  Is it inflammation, is it a nutritional deficit, is it gut, is it from pregnancy, should I be doing something different, is his health at risk?  All the questions remain and everyone has their own opinion. 
To make matters more difficult, his BCBAs are certain that he has selective mutism.  They mentioned it a long time ago, but symptoms are getting much worse.  Selective mutism is when a child is silent in specific settings due to anxiety, where they can otherwise speak regularly.  So… autism adds an element of “is this really selective mutism” to the picture because of his language disorder.  However, his therapists seem sure because he will be silent after being asked very simple questions that he easily answers all the time.  Over the course of a few weeks he has gone days with up to 4 hours of complete non-compliance and silence even when presented with the highest motivational reinforcers like a lit Christmas tree.  They are at a loss of how to help his anxiety and can visibly see that he is upset.  Many things set it off like sounds from outside that he doesn’t recognize or people crying loudly.  Traditional treatment is counseling, which won’t work for him because he doesn’t have conversational speech.  Behavioral treatment is probably our only option for now. 
Basically, all the plans I had for Jacob have changed.  I think I assumed that trusting God through the big issues would then lead to answered prayers of healing or mainstreaming for Jacob by now.  I don’t know if I ever told myself that, but based on my heartache and disappointment I can tell that’s how I truly feel.   I assumed that the textbooks would be exactly correct in Jacob’s case and that full-time therapy during the preschool years would enable him to be in classes with typical kids his age by now.  I thought that my prayers for his life would be answered in the way that I wanted them to be answered.  But they haven’t.  And it hit me a few weeks ago during a sermon.  Had I been praying for God’s will in Jacob’s life in everything, or was I praying for God’s will in some things hoping that my will or my prayers would be answered in others?  My Pastor said it is our responsibility to plan.  Through our planning process we should search the intention of our hearts and motives, submit our plans to the Lord, trust Him fully with the plan to either bless it or change it and trust in him.  While I believe my intentions are pure, I fully realize that there are times that I am actually scared to pray for God’s will over my own. It’s as if I am trying to trick God by not saying that…as if he doesn’t see that I was trusting my plan over His.  I cried as that sermon as it sank in.  Is there ever a time that I want to be out of God's will? Certainly I am better off in His will, no matter what that means, so there is no good reason to pray against it or leave it out of my heart.  I am so happy that God knows more than me and it is simply prideful to think that my plan would ever be better. 
Time for a new plan.  Jacob will not be mainstreaming within a year.  It may be much longer than that, if ever.   I think I will begin the process of making a new plan and start with lining up my heart to desiring the will of God.
So, with all this said I would absolutely love and appreciate your prayers.  I know this is just a rough patch on the roller coaster that is autism and I know God will use this to grow our family, but I am tired and would love a breakthrough for him.  God is good and God is bigger than this.   I know some of you are in the pits just like me trying to dig your way out.  Cry out to God and trust in Him.  Know that if you put your faith in Jesus and make Him Lord of your life, His future promise is enough to get you through whatever you are going through.  I have to keep my eyes on Jesus especially in these difficult times. I am so thankful knowing that I can bank on the promise of peace and rest forever to sustain me and that times like this are just temporary.  God is so awesome.
“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 ESV)

Wednesday, September 14, 2016

Help for parents with a newly diagnosed child with autism

If you know someone with a recently diagnosed child with autism, these links may be helpful in understanding autism and finding a good treatment.