Tuesday, November 17, 2015

Selective Mutism

I went to another observation at Jacob's clinic.  The BCBA and his lead therapist told me that they cannot diagnose, but believed Jacob has selective mutism
From Wikipedia:
Selective mutism (SM) is an anxiety disorder in which a person who is normally capable of speech does not speak in specific situations or to specific people. Selective mutism usually co-exists with shyness or social anxiety.  People with selective mutism stay silent even when the consequences of their silence include shame, social ostracism or even punishment.
Besides lack of speech, other common behaviors and characteristics displayed by selectively mute people include:
  • Shyness, social anxiety, fear of social embarrassment, and/or social isolation and withdrawal
  • Difficulty maintaining eye contact
  • Blank expression and reluctance to smile
  • Stiff and awkward movements
  • Difficulty expressing feelings, even to family members
  • Tendency to worry more than most people of the same age
  • Desire for routine and dislike of changes
  • Sensitivity to noise and crowds
I have always known this about Jacob, but contributed it to his autism.  The therapist says that is not the case.  She has worked with many kids on the spectrum and Jacob's issue is different, it goes beyond anxiety when lots of people are around.  Jacob's old therapist even consulted with his new therapist in the beginning to let her know that Jacob has intense times of muteness and she was concerned that they would not see how much he is capable of doing and saying because of this.  Throughout the last 6 months they have observed characteristics in Jacob that they do not see typically with kids on the spectrum.  Jacob will be fully engaged in verbal tasks and then hear a tiny sound, see a door open, or a new person and go completely mute and start showing major signs of anxiety.  He does this with timers, open drawers, all kinds of things. He stops speaking all together in new settings or he will begin aspirating.  This is also different from his adversion to loud sounds where he covers his ears.  This is an anxiety causing him to lock up when he sees new people, things or situations, not just sounds.  It makes me wonder what he is worrying about in that little head of his.  In his observation I was able to see him do it.  He was sitting at the table with his everyday therapist working well.  Then all of sudden he heard a small sound outside of the room.  He stopped talking and started making weird faces and locking up.  Then he began his breathy voice.  The lead therapist told me that this was typical of him when he hears unknown sounds.  He also clams up and doesn't eat well in the lunch room that he is used to when a new person is in the room.  I've seen him do it thousands of times and thought it was an ASD trait and apparently it isn't.  His goes beyond the "norm" for autism if that makes sense. 
They have begun a program of desensitizing him, but it looks as if we may need to consult with a speech therapist as well.  I would love to hear from someone who has a child with this diagnosis and what steps you have taken to help reduce anxiety and increase speech.
Speaking of worry...the last couple of weeks have been pretty difficult for me.  It seems like I've been hit with many stressors all at one time.  Its easy to forget that my worry isn't helping anything.  I want so badly to have control over each situation, but I don't.  A good friend invited me to a Casting Crowns concert the other night and they sang a song that I had heard before, but never really listened to.  By the end I was crying because it was such an encouraging reminder.  I wanted to share it for others maybe needing encouragement. God is sovereign.  Let go of your anxiety and trust HIM.
View it here:
Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, Ill hold your heart
Ill hold your heart
Come to Me, find your rest
In the arms of the God who wont let go

Wednesday, September 23, 2015

There are no coincidences: Our family's testimony

It occurred to me that I hadn’t taken the time to share part of my family’s testimony yet in regards to how the Lord has perfectly provided for us and Jacob. I guess when it comes to finances there is a part of us that always wants to keep it a secret, or maybe its pride, embarrassment, I don’t know.  No matter what the case, I don’t feel like this story is mine to keep as a secret.  What God has done has been nothing short of a miracle for us, and it was certainly nothing that we did.
Let’s start at the beginning.  Jacob was diagnosed with autism.  Cret and I were devastated.  It is beyond scary to not know how to parent, connect, and communicate with your child.  Additionally, you don’t know what do for them as far as treatment and care.  The different opinions are overwhelming.  After much research, we decided whole-heartedly on ABA therapy.  It is the only scientifically proven treatment for autism. Over the years, ABA has proven to increase Jacob’s skills, speech, and engagement. 
Ok, so we decided ABA was best.  There was only one problem. Its $5,000/month or $60,000/year and our insurance didn’t cover a penny.  The most heart breaking and agonizing thing about it was that we knew this therapy was statistically proven to help Jacob in really crucial ways, but we couldn’t get it for him. We asked many people to pray for us and for him. 
For a while we tried part-time ABA, but even that was costing us too much and we saw that he desperately needed more.  Then after begging and pleading with Cret’s work they decided to reimburse any therapy we would pay for.  Well, we didn’t have thousands upon thousands of extra bucks to put down, so after prayerful consideration we felt that the Lord wanted us to sell our home.  The Lord had placed us in a home (our dream home we thought) that year and we were able to sell it and earn enough profit for 1 full year of ABA therapy.  There really wasn’t a legitimate reason for us to have made such a profit being in that home less than a year, except that the Lord had his hand on it.  I asked Cret what we would do after that year for Jacob, when the money ran out, and he told me very confidently that the Lord would provide.  I look back at his faith and it astounds me. I believed him.
Approaching the end of the year we had exactly 3 months left of therapy money in our account.  I can’t express the feelings I had at that time.  We literally had no plan for the end of that year. We began to pray.
Meanwhile, I had a friend asking me for advice.  Her child had been recently diagnosed with autism and she was overwhelmed and stressed and sad.  She wanted to know why.  I had a hard time knowing what to say because I don’t have an answer as to why our kids have autism, but I trusted God.  The next morning I woke up and thought, what if God told me, “Allison, I could heal Jacob right now so that he could live independently or I can be glorified more if he remains autistic.” Obviously, I didn’t think God was really telling me this at that moment, but I had to ask myself what I would say.  At that time I found myself praying for Jacob’s healing more than most things.  Did I really want to glorify God most of all or was Jacob my first priority?  So I began reading about people with disabilities in the Bible.  People that were blind, deaf, and lame were allowed to suffer and then healed by Jesus so that HE could be glorified and show HIS power or exemplify our desperate need for a Savior.  Then I read about Job and how the book shows that we know so little about God’s big picture.  That gave me hope because we can trust in God’s faithfulness and sovereignty and plan for us because it’s bigger than our ideas, hopes, and dreams.  I realized that I needed to trust God fully with Jacob and make God’s glory my priority.  I discussed my conviction with Cret and he agreed.
Soon afterwards, our church rolled out the last step of a plan unlike any other.  The vision for this plan was to be in a position to plant churches and send out some of our own members and money to areas where they are needed permanently. These churches will be their own autonomous churches (not branches of our own).  It’s a vision that gives away our church’s money and members all for the glory of God to spread the Gospel where needed. To make this happen, our church agreed on a plan to be built out and debt free to begin planting.  Many members were giving money in order to make this happen for the Lord.  I want to stress that my Pastor in no way pressured anyone to donate, it was something for each person/couple to prayerfully consider between themselves and God.  If you want to know more about this plan visit http://nehbc.com/futurebecomesclear
When we got home from hearing this plan Cret immediately told me to sit down.  He told me that I needed to pray about something.  He explained that we sold our house to for Jacob’s therapy and that God provided that money for the last several months.  There was no logical reason that we had that much equity in a home we had just purchased.  God did it, so he wanted to give money to God for church planting.  We decided to pray on it and then write down how much we felt we should give separately to see if we were on the same page. Obviously, this money was coming out of savings.  Savings we needed for Jacob. This was the time to choose…God’s glory or Jacob. Not surprisingly, we both had written down the EXACT same number (1/3 of our savings).  This would cut Jacob's therapy down a full month. I started crying.  I couldn’t believe the timing of all of this.  God had just revealed to me that I needed to make HIM my priority and now we needed to literally put our money where our mouth was.  AS I sobbed, I told Cret he had better get to that computer and donate it now before I changed my mind. He laughed, but he went straight to the computer and did it right away. It was hard, but we knew it was right.
The most amazing miracle happened that week.  Literally 2 days later, Cret got a call from a man from our church with a job offer.  Cret had not applied for a job anywhere.  I would say ironically, but it is absolutely no coincidence that this job also happened to offer full insurance coverage for Jacob’s ABA therapy.  Within weeks, Jacob began at a local ABA clinic full time.
God has faithfully provided for us over and over and over.  It is impossible to think that the timing of all of this was anything short of the hand of God.  I know that we may still face challenges ahead, but I am confident God will see us through.  We are so thankful.  Through all of this we have learned that there is no other choice but to trust God's plan for our lives, our finances, our hopes and our dreams.  There is so much more to the story, so much more that I could share about God's goodness, but I will leave it here for now.

Sunday, September 13, 2015

Team Jacob's Theme Song

Jordan and Makaylee spent a lot of time writing all the lyrics to this amazing song to try and raise donations for our team for the Autism Speaks Walk.  Please listen, share, and donate if you feel led. I am so proud of these girls for using their amazing talents and time to try and help. Thank you for your support. Click this link to donate:
Here is the link to see them featured in the Autism Speaks blog:
Here is the video's youtube link:

Wednesday, September 2, 2015

My 5 yr old's BFF is 23, and I'm ok with that!

Something remarkable happened yesterday. Jacob made it clear that he has his very first BFF.

Jacob rarely expresses interest in people.  We always get pumped up when he requests someone because its such a rare event. Sometimes he asks for Mommy or Ms. Misti or Daddy, but once he sees them it is a short lived excitement.  My sister-in-law always gets so excited when Jacob runs up to her to give her even a quick hug.  He just isn't that in to people. He fixates on certain items or toys that holds his interest at that specific moment.  He loves electronics, but he just doesn't care much about having friends yet.  That's pretty much what autism looks like for many people.

Lately, however, Jacob has been requesting his old therapist Summerr.  Words cannot describe the type of therapist she was to Jacob.  I've been told that sometimes therapists/students bond a little more with particular teachers/children they work with and this was no exception with her and Jakey.  He instantly loved her, her energy, her silliness, her singing.  She is a special person through and through.  But as our lives changed, we had to switch therapy companies and no longer could keep Summerr on with us.  I am pretty sure I cried for a month about it.  Summerr brought out a silliness in Jacob that we had never seen, she got him to say things we never could, she played games with him that he refused with others.  She was just that good. 

The other day I called Summerr and asked her to babysit because Jacob has not stopped requesting her.  A human.  He was requesting a particular human over and over.  I mean, this is big.  So she agreed and what happened was simply magical to me. 

Jacob was playing on Cret's IPhone as she pulled up. Anyone who knows Jacob, knows that getting him to voluntarily give up an electronic doesn't happen.  As she walked up, I yelled to Jacob, "Summerr is here!" He instantly dropped the phone and ran to the front door with a smile I have rarely seen on his face, and never about a person.  He waited until she came in and gave her a huge hug and kisses.  Then as I showed her around he ran into the game room to grab his giant old therapy table and tried to lift it up to bring it to her, as if he wanted to get right back to work with her (because that's where they always used to play).  I don't know, maybe its just me, but moms who have kids in therapy all day know they don't usually request more therapy.  LOL So, it just continued from there.  He rode on her shoulders and would keep looking down at her face to make sure it was still her.  He kissed on her and read to her and made her play with him.  He even snuggled with her at bedtime and Jordan said she saw him grab Summerr's hand.  It was his first time ever to play with a friend for longer than 2 seconds.  My heart is so full I could just explode. 

So, his BFF happens to be 23 and I happen to be really excited about it.  I know most moms wouldn't want their child's best friend to be an adult, but I guess sometimes that's what autism looks like.  It is different, it's challenging, it's special, and it's so rewarding.  I am so thankful that the Lord put this wonderful woman in our lives and that she loves Jakey so much. 

God, thank you for therapists and special education teachers that truly invest their lives in these precious kids.  Raise up more teachers who genuinely care because they make such a difference. Thank you for Summerr.  Please continue to bless her life as she blesses others. 

Sunday, August 23, 2015

Why I Tell People My Son Has Autism

A conversation I had today spurred the topic of whether or not special needs parents should share our children's diagnosis with people. This, of course, is referring to a diagnosis that can't been seen.  Most parents are pretty passionate about the issue. I will never imply or assume that my way of parenting is the correct or the best way, nor do I judge people who make different parenting choices than me.  I get things wrong a lot. The only TRUTH I believe in is the Bible.  I know that this post will completely contradict what many special needs parents feel to be true. In reality, I can see both sides.  I understand there may be just as many arguments against what I am saying, but I thought it may be helpful to new "autism parents" to read a different perspective.
There is a stigma surrounding autism.  I can sort of understand why. Autism is hard and scary and expensive with many, many unknowns. When I tell people that Jacob has autism, I almost always will hear how sorry people are for me or a complete avoidance and change of subject.  Its not a fun thing to talk about typically.  In fact, many parents do not discuss their children's diagnosis.  I totally get it. I get that parents don't want a label on their child.  I get that they want to give them the decision to tell the world if they decide to.  I also understand that they don't want their child to be treated differently.
But I would love to share my perspective.
Here are the TRUTHS that I know.
Psalm 139:13-14
13 For you formed my inward parts;
    you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
Exodus 4:10-12
10 But Moses said to the Lord, “Oh, my Lord, I am not eloquent, either in the past or since you have spoken to your servant, but I am slow of speech and of tongue.” 11 Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord? 12 Now therefore go, and I will be with your mouth and teach you what you shall speak.”
John 10:10
10 The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly. 

John 9:2-3
And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

 I know and trust that God is perfect; totally without error.  I know and trust that he created Jacob just as he would have Jacob be.  As Jacob grows, I want him to understand that God created him and allowed him to have autism along with many other wonderful qualities.  Although we don't always understand the why, we can trust that this is God's plan for Jacob's life.  I am thankful that God is sovereign over all things, especially the challenging things, because I know that He can use those things for His glory and our good.

 And we know that for those who love God all things work together for good, for those who are called according to his purpose. -Romans 8:28

I hope that Jacob will see his unique qualities as a gift from God that can be used to glorify God in whatever way God desires. I want him to grow with an understanding that God made him different and that is not only ok, but exactly as it should be. Our God is wisdom and is faithful and is trustworthy and also is Jacob's perfect creator. 

I understand that some people don't share the autism diagnosis with others because they feel that their child may be treated differently.  This is a real concern.  However, as I have read testimony after testimony of adults with autism who did not share their diagnosis, most were treated differently anyways and struggled with making friends and bullying. I am hoping that some people will show Jacob compassion knowing his specific challenges and love him for him.  Do I think that everyone will love him and no one will hurt him if we tell people he has autism?  No way.  I know that God has not promised that Jacob or our family will have an easy life, but I am certain that He will bring us through any trials we may have if we trust in Him and seek Him.  I also know that this life is not our own, but God's.  I want Him to be able to use "autism" in whatever way he desires for Jacob and our family as he already has.

Romans 5:3-5
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

I have always felt that if I keep this part of Jacob's life a secret and I tell Jacob that he doesn't have to tell anyone about his autism, I may be setting up an environment for him to believe that maybe he shouldn't tell people, or that something is wrong with him.  As crazy as it may sound, I want him to be thankful for his autism, whether he grows to be fully independent or not.  I hope and pray that he will be a man of God that seeks the Lord with all of his heart and honors God by sharing his testimony and how God guided him through his struggles.

2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

I want the environment of our family to be fully accepting of autism.  I want to talk about it, cry about it, rejoice about it, be thankful for it, and overall give all the glory to God for everything He has done for us, our joys and struggles. God is good.

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.