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Monday, August 11, 2014

The music box

Yesterday my husband sat in my daughter's room watching Jacob. My daughter just got an old music box from her grandma and Jacob is fascinated with it. He was flipping her music box upside down, winding it, and running around in circles while it played. Cret watched Jacob for a long time.  Jakey would listen and know exactly when the music was about to stop and then get really close to the music box, make a funny sound with his lips, and then turn it back over to wind it again. As the music started back up Jacob would look off in the distance with this smile of pure joy and begin running in circles again.  He did this over and over and over. My husband said that it made him tear up a little.  He is not an easy crier. He described this to us and my daughter and I replied, "I do that all the time."
We all watch him as he does these strange things repeatedly and there is something about it that makes us incredibly sad, happy, hopeful, and a little scared all at the same time.
My husband said, "As I sat there I prayed, if it was God's will, one day he will be able to tell us what makes him happy or communicate with us."
I definitely know the feeling. You want your child to be happy and you want them to be able to care for themselves and protect themselves and communicate. It is a heartbreaking thing to see your child suffer or see them have difficulty in life that is unexplained. You feel powerless knowing that there is very little you can do to help them.
It made me wonder how people do this without Christ in their lives. I simply cannot imagine going through this journey without having a relationship with Jesus with whom my hope comes from.
It's not a hope for Jacob to speak or to get better. It's not a hope that relies on my circumstance. In fact, that's the wonderful thing about having Jesus as Lord of your life.  Regardless of bad circumstances, God is faithful and gives His children grace. He isn't a magic genie waiting to grant your wishes or desires, but in HIs loving kindness transforms your heart once you place your faith in Him and that heart change also changes your desires to that of wanting God's will to be done and God to receive all the glory, no matter what that means.  I have faith that God has a perfect plan and that plan is bigger than us.  That is how our family remains joyful in the Lord even in hard times. Having a personal relationship with the Lord gives us the strength to go on, God gives us peace that surpasses understanding. I want that for everyone going through this autism journey.  I want you to see the hope that comes through placing your faith and trust in Jesus.
 
Romans 5:2-5
Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. 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.
 
The Bible tells me that Jacob is made in the image of God. He has a soul and he is made to give God glory.
 
Then God said, “Let us make man in our image, after our likeness. And let them have dominion over the fish of the sea and over the birds of the heavens and over the livestock and over all the earth and over every creeping thing that creeps on the earth.”
27  So God created man in his own image,
in the image of God he created him;
  male and female he created them.-Genesis 1:26-27
 
The Bible also tells me that God is trustworthy. I do not need to be angry about Jacob's situation or fearful for his future or feel like I am the only one who can care for him.
 
 

32 He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? -Romans 8:32

 

 
32 “Fear not, little flock, for it is your Father's good pleasure to give you the kingdom. -Luke 12:32

 

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. -2 Corinthians 12:9

 

I truly believe that God can work in the life of your child with autism and through their lives for you in ways that can bring God glory if you embrace your situation and trust God in it. He may not work in the way we want, but He can do great things for His kingdom through any situation.


 
 Romans 8:28English Standard Version (ESV)
28 And we know that for those who love God all things work together for good,[a] for those who are called according to his purpose.

God is perfect. The Bible calls this holy. God created man and desired to be in relationship with man, but also gave us free will.

With the choice, we have all decided to sin against God. I have lied, you have lied, I have stolen, you have stolen. Even one sin makes us guilty of being sinners against God. But God still desires to be in relationship with us.
Romans 3:23
23 for all have sinned and fall short of the glory of God,
But God is Holy and sinners cannot be in heaven with him or in right relationship with him, our sinfulness separates us from God for all of eternity. God says that the punishment of sin is death  (separation from God for all of eternity). But God still desires a right relationship with us here on earth and in heaven.
Romans 6:23
23 For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord.
But the Bible says God does not just leave us there. God sent a way of redemption for us.  God sent His son, Jesus, to us to live a perfect (sinless) life and to die on the cross for all man's sins and then to rise again on the third day, conquering sin and death forever.
Romans 5:8
but God shows his love for us in that while we were still sinners, Christ died for us.
The Bible says that all who believe this and call on Jesus to be the Lord over there life and live in their hearts will be saved and reconciled with the Father. You can live in right relationship with God if you choose to turn away from sin and accept Jesus Christ as Lord of your life. Living in right relationship with God has been the only joy for me in troubled times. God provides me with help in parenting and difficult times and joy and hope in all times.
 
 Romans 10:9-10
because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. 10 For with the heart one believes and is justified, and with the mouth one confesses and is saved.
 
If you understand your need for a savior and want to be in right relationship with God and reconciled to God you can place your faith and trust in Jesus right now, as you are.  You don't have to do anything or be good enough, all you have to do is surrender and ask Jesus to be the Lord of your life.   If you have any questions about Jesus or salvation please feel free to contact me if you want at allisonhill4jesus@yahoo.com and I would be happy to discuss how Jesus has saved my life and how you can come to know Jesus. I would also love to know if you have made the decision to surrender your life to the Lord. My prayer is that you can know a peace that surpasses all understanding no matter what you are going through right now.
 

 Philippians 4:4-9English Standard Version (ESV)
Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you.

 
 

Thursday, August 7, 2014

Today is the day!

I am so very excited to share that today is the release date of my new children's book. 
 Jacob's Special Power is a book that illustrates the value of all people, regardless of their differences.  Wrapped inside an adventure filled with superheroes and aliens is a powerful message about acceptance and appreciating all people.  I truly believe that God has a special purpose for everyone. We should be actively having conversations with our kids about how to show kindness and compassion to those with special needs. 
My hope for this book is that it will be a fun way to help parents and teachers stir up conversations about kids who are different and ways to show them acceptance.  I hope that it will be a book that kids can relate to and see that they are each special no matter what. 
I was very honored to have author and autism activist, Dr. Temple Grandin, and actor, Ed Asner, endorse the book showing their support in this journey of teaching acceptance for those with special needs.
100% of my proceeds from the book will be donated to Autism Speaks and The Dan Marino Foundation.  These organizations are dedicated to research, therapies, advocacy and helping families with autism and other disabilities. 
If you would like to purchase this book please visit www.blackrosewriting.com/childrens-booksya/jacobs-special-power
Thank you for your support and for supporting these special kids
Visit www.facebook.com/jacobsspecialpower 

Sunday, July 27, 2014

What If

Imagine yourself in this situation.
 
What if God, the almighty creator of the world, the One who is fully trustworthy, fully just, fully loving, and the ultimate healer, came to you and told you He had a precious gift for you.
His gift was a child.
Imagine He told you that he wanted no one else but you to have this child.
Imagine He told you that this child would change your life in every way, this child would bring such incredible joy to your life.
Imagine that He then told you that your life would not be ordinary, you would not be able to have a life like everyone else, but the reward would be indescribable.
Imagine that God told you that this child would have many challenges and those challenges would make life hard often.
Imagine that God told you that He knew YOU were the perfect parents for this remarkable child.
 
What would you say?
Can you even imagine saying no?
 
Yet sometimes we question God. Why is this happening to my child?  This can't be God's plan.  What if in your sorrow or anger or depression you are missing all the joy that God has for you and for your child through this situation?
 
The fact is, God did give YOU this child as a gift.  He trusted you to care for them and He wants you to trust Him in all things and through all things, even hard times.
 
My mom told me this one day as she described what a blessing Jacob would be to my life. People sometimes lose the big picture as they struggle with deep despair, stress, financial problems, marital problems.  The big picture is that GOD is in complete control. He did give you this child.  Are you embracing your circumstances in a way that honors God and shows Him that you are thankful for His gift? 
 
For me, I find myself sometimes complaining about therapies, speech difficulties, treatment costs, safety issues. I lose the big picture. I get lost in the stress so often. 
 
God, You are holy.  Let your will be done in my life.  Remind me that YOU are in control.  Thank you for my precious gift.  I do not say NO to you, I say YES. Please show me how to use this gift to honor you. Show me how to give glory to you through all the stress or pain or hardships and in the good times and laughter and joy.  Help me in parenting all of my precious children.  Help me to see beyond my life and focus on YOU. What would you would have me do for you and your kingdom? Thank you for sending your Son to die on the cross for my sins. 
In JESUS' name,
Amen!
 
 
 
 
Psalm 127:3-5English Standard Version (ESV)
Behold, children are a heritage from the Lord,
    the fruit of the womb a reward.
Like arrows in the hand of a warrior
    are the children[a] of one's youth.
Blessed is the man
    who fills his quiver with them!
He shall not be put to shame
    when he speaks with his enemies in the gate.[b]
 
 
 
Psalm 139:13-16English Standard Version (ESV)
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.[a]
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.
 
 
 
Proverbs 3:5English Standard Version (ESV)
Trust in the Lord with all your heart,
    and do not lean on your own understanding.

 
 


Friday, July 25, 2014

When the teacher said she didn't want "that kid" in her class...

I recently wrote a letter to a mom/teacher last week that has caused quite a buzz.  I think it stirred people up because the topic needs to be spoken about.  Teachers need more training and assistance and sometimes they need a little more understanding and compassion for people with ASD. 
 
We were at Tyler's t-ball game and a teacher made a very hurtful comment about a special needs child on the team saying, "I pray to God he isn't in my class next year." I was simply shocked.  I just stared at her for several minutes, composing myself thinking about what I could say.  She didn't realize that my son with special needs was sitting right in between us. My daughter looked at me and said, "MOM! What are you going to say to her.  Tell her he has special needs." I didn't say anything. I knew that a quick reaction probably wouldn't help in that moment and really I felt sad.  I was sad for her and I was sad for any special needs child who is in a class with a  teacher that doesn't want them.  I went home, got her email address, and let her know what I felt about that comment. You can read the letter here:
 
 
 
or on facebook here:
 
https://www.facebook.com/autismspeaks and scroll down to the article
 
 
Her surprising response to my letter was respectful, but was totally and completely blaming it on bad parenting. Time and time again we hear people blaming the parents.  Autism is a neurological disorder and these children are so remarkable if you take the time to see them, past their diagnosis.  What I wanted people to gain from sharing this letter is important and goes much further than just to this woman.
 
1. I always feel like the best way to fight hatred, ignorance, and just plain ugliness isn't by lashing out.  We need to educate and help people to understand autism and that there is much more to these special individuals than "bad behavior".  There are many ways to reach them, it may just take some extra training.
 
2. Always be mindful when little ears are around (and big ears for that matter) especially as a professional.  We adults are responsible for illustrating to these little ones to either be accepting of children with special needs or not.  Regardless of why the child was acting out, whether people believe its the parents, its the disorder, etc. no one needs to say things like this about children. 
 
3. It is incredibly obvious that teachers need more training as more and more kids with autism are being mainstreamed into their classes.  The fact is, autism is growing in prevalence.  Not all children with autism need to be in a special needs class. Some need to mainstream in order to grow and develop.  This is just a fact. So if you are a teacher and not willing to try and just want to make it a miserable year for everyone,  it may be time to consider a new profession or a teaching job in which children will not be mainstreamed into your class.
 
4. Even without training, compassion and caring can go a long way.

Colossians 3:12-17English Standard Version (ESV)
12 Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, 13 bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. 14 And above all these put on love, which binds everything together in perfect harmony. 15 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. 16 Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. 17 And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.


1 Peter 3:8-9English Standard Version (ESV)
Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind. Do not repay evil for evil or reviling for reviling, but on the contrary, bless, for to this you were called, that you may obtain a blessing.

Ephesians 4:32English Standard Version (ESV)
32 Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.



Tuesday, April 29, 2014

Perfect provision


Perfect provision.  
We are beginning yet another new chapter in our autism journey.  As I am sure most of you can relate, we have basically run out of money for ABA therapy.  It costs us thousands per month and we are not rich so we have prayed and prayed regarding decisions for Jacob.  After seeing his progression with ABA there is no way we could pull him out of it.  So, after much prayer, we have decided to sell our home to use the equity for therapy this next year.  I realize there are so many ASD families that go through this very thing.  Its been a hard change, but we know that it is the very best decision for our family. As I sit here reflecting on what this means for us, I can't help but to see God's perfect provision for our family.  This home is a means of providing the treatment for Jacob that he needs.  This journey is pushing us to realize what is and what is not truly important.  I have to keep reminding myself that its just stuff.  My house, my furniture, it is all just stuff.  In God's eyes, I want to be an example of a woman seeking Him and not materialism.  Its been a hard lesson for me that I am still trying to fight at times, but I am very thankful for all that He will do in our family through this.  I am very thankful to have a new home to move in to and I feel that having a smaller space may just bring us all even closer together and I look forward to that sweet time.  God is so good.  Please continue to pray for us, that the closing will go as planned for May 28th.  Please be in prayer for all the families selling their home and belongings for their children's needs.  Thank you God for these precious children and all the real joy they bring to our lives.  Thank you for the lessons we can learn through them. 

1 Timothy 6:6-10

But godliness with contentment is great gain, for we brought nothing into the world, and[a] we cannot take anything out of the world. But if we have food and clothing, with these we will be content. But those who desire to be rich fall into temptation, into a snare, into many senseless and harmful desires that plunge people into ruin and destruction. 10 For the love of money is a root of all kinds of evils. It is through this craving that some have wandered away from the faith and pierced themselves with many pangs.

Tuesday, April 1, 2014

Why we "Light It Up Blue"


I held him in my arms smiling and trying to get his attention.  This precious gift, this tiny baby that I longed to make a connection with. He wouldn't look at me.  No matter what I did, he refused to smile back at me or at anyone for that matter.  He wouldn't play with his image in the mirror.  All my babies loved that, why didn't he?  He was quiet.  Most people would consider him a "good" baby.  No tantrums, no screaming, mostly just quiet.  
Deep down I knew something was wrong.  I watched him grow.  I carefully took note of things that just didn't seem right.  He didn't point at things he wanted or look at what I would point at.  He wouldn't sit up until 11 months, why wasn't he sitting up?  He would throw his head back and forth and flap his hands.  He made some sounds, but wasn't really babbling a lot.  No words like "Mommy" or "Daddy".  Just silence.  So I researched a little.  Just curious, not sure, but wondering...Could it be the A word?  Was it too soon to even consider the thought.  Many people thought so.  Many people say boys just take a long time to develop.  "Don't worry, he is such a good baby" they said.  But I knew better.  I knew something wasn't right.
At 15 months I did something about it.  I wrote everything down that I could remember and I took him in for an evaluation with the pediatrician.  She sent us to the Neurologist where it was confirmed that Jacob had autism.  It was the most terrifying day of my life.  Hearing those words.  I cried harder than I ever had.  I was clueless about what to do next. 
Since then, though, I have learned a lot.  I looked up information on the Autism Speaks website.  I learned about early intervention and ABA therapy.  I realized autism doesn't have to be as scary as it seems.  Parts of autism are beautiful.  The way he sees the world, the joy and laughter he brings to our family. Its priceless.  He is so much more than his autism.  He is a little boy who loves trains and puzzles and playing on the ground with his Daddy.  He loves lining up his toys so they make sense to him.  He loves doors and cabinets and the way they move.  He loves being outside and he loves music.
On the other hand, he can't tell us how he is feeling.  He can't tell us what he wants to play or explain that when he says he wants milk, sometimes he actually wants water.  He can't tell me no.  All questions are answered with a yes, even when he is trying with all of his heart to say no.  He can't stand when a door is left open, it seems like it physically hurts him.  Sometimes he has repetitive movements that hurt him, he wants to stop, but I can see that he just doesn't know how.  When he hears a dog bark, he covers his ears and cries even when its far away.  He bolts.  The minute he has a chance he runs in any direction as fast as he can. 
What is autism?  Why does he have it?  What can I do to help him become more independent?  
These are the questions that every mom of an autistic child asks herself.  These are the reasons why our family is involved in "Light It Up Blue".  We want to help find answers.  I specifically want to show people how important it is to learn all of the early warning signs of autism so that they can begin getting their children help as soon as possible.  The brain has more plasticity when a child is under the age of 5 years.  This is the best time to get intensive early intervention.  This gives autistic children their best chances of independence in life.  Help spread awareness to help autistic children.  Its so important.  Help children like Jacob learn to speak and learn to live a more independent life.  
Light It Up Blue tomorrow by wearing blue or purchasing a blue light bulb from the hardware store to show your support.  Visit autismspeaks.org to learn the early warning signs.

If you'd like to donate to Jacob's Team: Hunting For A Cure please visit www.walknowforautismspeaks.org/houston/cretandallison Your donation is tax deductible and goes directly to Autism Speaks to help fund the needed research for children and adults on the Autism Spectrum.

Monday, March 17, 2014

Tics, Stimming, or Seizures: Jacob's New Diagnosis

I've been avoiding writing this blog because I feel like I have been going through a brief period where my heart was aching a little too much to write, meanwhile knowing I have much to be very thankful for.  Nevertheless, I have decided to post some information about this because I know there are others out there that are a bit confused about tics, stimming, and seizures.  

We visited the neurologist a couple of weeks ago.  I brought in plenty of videos and he watched them all carefully.  He explained to me the differences between seizures, complex tics and stemming in this easy to understand non-technical way:
  • Stimming is repetitive movements that a child chooses to do because it gives them self stimulation and feels good.  These things are done often and sometimes for long periods of time.
  • Complex tics, as in Tourette Syndrome, are movements that the child does to fill an urge that they often cannot help or are not in control of, additionally they don't always like the tics or they can cause discomfort.
  • Seizures are complete loss of consciousness or a brief loss of consciousness followed by a period of lethargy (not in absence seizures, however).
So, he studied Jacobs videos and observed for about two hours.  He ruled out seizures because in full seizures he would lose consciousness and shake or fall to the ground and in absence seizures the child usually stares off or blinks, while being sort of out of it.  He said that there are no seizures that look like what Jacob is doing.  We went over all of his history and he told me that the things that Jacob is doing are actually stereotypical complex tics.  They are sharp movements that often time make him feel upset or bother him and he doesn't seem to have a pattern.  For instance, he doesn't do it just as an avoidance technique or when he is upset.  He also does it in the middle of playing or eating or walking.  Doctors suspected Tourette Syndrome in December of 2012.  He asked to keep his videos for research and training at Texas Children's.  

Then he diagnosed Jacob with Tourette Syndrome. 

I asked him if it was common for a child to have both autism and Tourette Syndrome and he said it was not.  Since then I have looked it up and I believe less than 10% of people with autism have both. 
I am praising God that Jacob is not having seizures.  I pray for those that are dealing with seizures on top of autism. I want to thank everyone very much for your prayers for sweet Jakey.  I know that we serve an awesome God and I am just trusting in Him for this journey and where it is taking us now.  May God get all the glory in all that we do.  


My favorite prayer over our lives and purpose...

Colossians 1:9-14

English Standard Version (ESV)
And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, 10 so as to walk in a manner worthy of the Lord, fully pleasing to him, bearing fruit in every good work and increasing in the knowledge of God. 11 May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, 12 giving thanks[a] to the Father, who has qualified you[b] to share in the inheritance of the saints in light. 13 He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, 14 in whom we have redemption, the forgiveness of sins.