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.

Monday, June 27, 2016

Jacob turns 6!

This past week Jacob turned 6.  I can't believe my baby is 6.  Pretty crazy. 
We had a very fun autism-friendly birthday party last weekend.  We were thrilled that several kids from Jacob's ABA clinic came out to celebrate.  I was nervous about it, I didn't know if the kids would enjoy it there or if it would be stressful.  For the most part, it turned out pretty nice.  It was a blessing to see the smile on his face the entire time. 
    I've been doing a lot of reflecting this week.  I’ve been looking at how far Jacob has come and thinking about things that I had wished for him by now.  Birthdays with autism can sometimes be bittersweet.  I hate to write sad posts, but sometimes that's just really how it feels.  Although I am always joyful about Jacob, there's still a lot that comes with his disability that makes me sad.  I had hoped that Jacob would be closer to mainstreaming after his “kindergarten” year, but he is not nearly ready.  I had hoped that he wouldn't try to run to danger anymore.  I had hoped that he would have some conversational speech, but he only regularly uses basic functional speech.  I know that Jacob’s speech has come so far in therapy, though.  I recently got a video of him in which he is describing what is happening in pictures.

He can say things like, “The boy is eating” or “The girl is reading”.  That is so amazing.  I remember at one point not knowing if he would be verbal at all and the first time he ever said Mommy.  It’s confusing to be so thankful and yet a little sad at the same time.  At home, Jacob only uses speech for very basic wants and needs.  We have to really get his attention and ask a bazillion times for speech beyond hi, bye, and I want sentences.  However, his attention span has grown from about 4 seconds to a few minutes at the table with puzzles, coloring, or play dough.  He listens to NO now and will typically stop what he is doing when we say it.  He is still extremely lovable and sweet.  He always has the biggest smile on his face.  He loves to play trains, ride his bike, run, play video games like Thomas the Train and most recently found a love for roller skating. 
I'm so thankful for how far he has come so it is quite confusing to feel sad.  It makes me feel guilty, too.  I know I have so much to be thankful for.  I am reminded by so many people about how far he has come and all of the amazing things that the Lord is doing through Jacob’s life.  So I have decided to allow myself to cry a little and then to trust in what I know (God) rather than my feelings. I need to focus on where we go from here and how I can be a better mom for Jacob, which I know starts by giving it all to God and trusting in his sovereignty and obeying Him.  I wrote out a prayer on his birthday and would love for those of you that pray, to pray this for Jacob and for us for his birthday.
Thank you for being holy and good and loving.  Thank you for all that you have done in Jacob’s life.  Thank you for entrusting us to be Jacob’s parents.  Thank you for the joy he brings and for all the lessons his life has taught us.  Help me to raise him in a way that glorifies and honors you. I pray that I will not hold on to any bitterness.  Please give me Holy Spirit contentment that supersedes my circumstances.  Give me a right view of you and a right view of me, so that I can let go of anything that I feel I am owed or deserve to make way for tenderheartedness.  Help show me glimpses of your purpose in my life and Jacob’s so I can follow your will and see the bigger picture throughout the struggles.  Please use Jacob’s life to glorify You.  Help give me wisdom to know how to be a parent to a child that doesn’t understand the way my other children do.  Help me to teach and disciple him so that he can also grow to be a man that loves and honors you.  Protect my marriage from the stresses of raising a child with a disability, from the financial stresses to the lack of time we get to spend alone and the worry.  Help us to find a local babysitter.  Specifically for Jacob I pray for communication, calm and greater attention span, independence, safety awareness and mostly that he will be able to learn about You and grow to love and serve you.  God thank you for being so good to us and giving us Jacob and all of our beautiful children.  Thank you for your sovereignty.  I pray for your will to be done in our lives and for our focus to be always be on you first and foremost.  In Jesus' name.

Sunday, April 17, 2016

Life is Stinkin' Hard

In the words of my Pastor in a recent sermon, “Life is stinkin’ hard."
One of the blessings of being in graduate school for education is that almost all of my research papers can be tailored to things that apply to me as a special needs mom.  Recently, I did research on caregiving and stress.  Interestingly, caregiving is considered one of the most severe chronic stresses.  It’s actually on the government’s radar as a health crisis often causing heart issues.  I went further and read research into being an autism parent.  One article even went as far as to compare the stress of an autism parent to that of a combat soldier.  Now, I would be very careful comparing my situation to that of someone whose life is consistently on the line.  However, for some autism parents, I could see how this would be true.  Their children are head-banging, self-mutilating, wandering, non-verbal, and suffer from malnutrition or other eating disorders, gastrointestinal problems and the list goes on. 
It’s stinkin hard.
And it’s not just a childhood disorder.  So often the media portrays autism as something that only effects children.  It doesn’t.  It is a disability that affects the person their entire life. 
So research affirms that caregiving causes intense stress.  No one can deny it’s hard.  No one can even understand how hard it is, except those in the situation.  So now what?  What do we do with this information?
From a science standpoint, the research was clear that our minds effect our stress levels.  Stress was tested through interviews and blood work and guess what they found?  People who had good coping skills, social supports, and high self-efficacy (belief that you can be successful at helping your loved one) had significantly less stress than those who felt helpless, who coped through denial, substance abuse, or self-blame.  One study compared people who attended support groups to people who attended classes on communication and coping skills.  Stress levels were the same before the educational classes for both groups, however, those who were taught good coping skills and good communication had less stress than the ones who only attended support groups in the follow-up assessments.  This information shows that many of us could very much benefit from learning good coping mechanisms and ways to feel confident in helping our loved ones.  I will put resources below if you’d like to look at the research. 
But that research led me to something much deeper than that which can be explained through science.  Sure we can educate ourselves and feel confident about helping our loved ones, but then what? What if we are trying our best, but our best is leaving us worn out, stressed, or even depressed? 
What if it’s still stinkin hard?  Where do we turn?
God has commissioned us as His followers to be disciples and share the Gospel with non-believers.  He has given us grace sufficient to heal our pain and crush temporary hardships.  He promises us that if we surrender to Him, He will be with us through every trial.  The best news of all is that when we die, we will be able to live forever with Him in eternity with no more pain, no more struggling, forever at peace.  That future hope can bring a peace that nothing else can.
I used to wonder if my hardships had anything to do with the Gospel.  Do you ever wonder how you can live your life on mission for Christ? Can we even do that if we aren’t missionaries being thrown in jail for the Gospel?  How can raising a child with autism, one who can’t speak, who needs attention at every moment, how can any of this have to do with the Gospel?  But I realized it can and it does.  God has called His children into unique life circumstances in which they can be bold for Christ and show the world that through His grace, those hardships can be endured with joy and hope and freedom from depression.  The outside world can look into our lives and see something that cannot be explained except through Christ.  That example is living our lives in order to point people to the Gospel.  It can also be an excellent catalyst for us to share the Gospel verbally with unbelievers when they ask us about the hope that is in us.
Jesus Christ came into this world to pay the punishment of death for sin, sin separates us from a perfect (sinless) God.  Jesus lived a perfect life and didn’t deserve punishment for sin, but died on our behalf because He loves us. Through His death, burial and resurrection he conquered sin and death so that if we believe and surrender our lives to Jesus we can be reconciled to God through His sacrifice. 
When we place our faith in Jesus, the God that created the world, the God that overcame sin, the God that is in total control is living within us.  Through the Holy Spirit we can be used for God’s glory. 
When we choose to rely on God through our sufferings, God always renews us and His strength in you will restore you.  When we are self-reliant, hoping that we have the strength to conquer each new obstacle, we will always be let down because a new struggle is always waiting right around the corner. This is often when people turn to alcohol, victim-like behavior, or depression.   
As believers, we need to be STRONG for God and through God.  We need to struggle well.  That doesn’t mean it won’t be hard and that doesn’t mean that we won’t struggle.  It most certainly WILL be hard, but as Christians, let’s struggle with hope and joy knowing that we are hand selected by God to go through this difficult time in order to point others to Jesus Christ.
I know that for me personally, when I hold tight to Jacob’s accomplishments and successes at the clinic, no sooner am I saddened by some new trial that has come up.  I can’t look to his achievements for real joy, though I can absolutely celebrate when they occur. But if that is my only sense of joy, then not only in the world of autism ups and downs will I often be let down, but Jacob will see me let down and my life will be a rollercoaster. 
I have to hold tight to my Creator and not His creation for real joy, purpose, and life.  I have to worship my God and find my peace in Him so that my family, my friends and those around me can see a joy that surpasses circumstance. 

2 Timothy 2:8-13
Remember Jesus Christ, risen from the dead, the offspring of David, as preached in my gospel,  for which I am suffering, bound with chains as a criminal. But the word of God is not bound!  Therefore I endure everything for the sake of the elect, that they also may obtain the salvation that is in Christ Jesus with eternal glory. The saying is trustworthy, for:
If we have died with him, we will also live with him; if we endure, we will also reign with him; if we deny him, he also will deny us; if we are faithless, he remains faithful—for he cannot deny himself.

If you don’t have a relationship with the Lord or hope like this and you want to surrender your life to the Jesus Christ or know more please email me so we can talk.
Much of what I have written was directly from one of my Pastor’s sermons that really spoke to me.  I would love for you to watch it.  Click here to listen.  

Gouin, J., Estrela, C., Desmarais, K., & Barker, E. T. (2016). The impact of formal and informal support on health in the context of caregiving stress. Family Relations, 65(1), 191-206. doi:10.1111/fare.12183
Mausbach, B. T., Roepke, S. K., Ziegler, M. G., Milic, M., von Känel, R., Dimsdale, J. E.. . Grant, I. (2010). Association between chronic caregiving stress and impaired endothelial function in the elderly. Journal of the American College of Cardiology, 55(23), 2599-2606. doi:10.1016/j.jacc.2009.11.093
Merluzzi, T. V., Philip, E. J., Vachon, D. O., & Heitzmann, C. A. (2011). Assessment of self-efficacy for caregiving: The critical role of self-care in caregiver stress and burden. Palliative & Supportive Care, 9(1), 15-24. doi: