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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.

Monday, February 24, 2014

Jacob's EEG and Abnormal Brain Activity


Jacob has had some changes lately in his behavior.  His motivation to speak has declined. The therapist has to use compliance for almost every task during therapy especially noun identification.  We have seen an increase in stimming, or what we think is stimming. I took him to the pediatrician to see what she thought of his recent activity and she said that the videos look like he is having partial seizures.  So we set off to TX Children's to have an EEG.  Unfortunately, during the 40 minutes of testing he did not have an episode and so they weren't able to see if it was a seizure.  They did say that the test came back abnormal with rapid brain activity like he is on drugs/stimulants.  He is not on any medication at all.  They said this is common in children with mental retardation or children on certain drugs.  It obviously concerns me, but the neurologist said that they see this sometimes and usually if the child isn't on drugs they never find the cause for the rapid activity.  Here is short clip of Jacob's movements.

  video
The doctor has suggested we get a 48 hour EEG and when we can we will hopefully get one.  We are going to visit the Neurologist at TX Children's this Wednesday to get more answers.  The thing that is the most strange to me about this recent behavior is that his stimming is usually for fun and pleasure and he always seems happy afterwards.  These movements, however, make him upset and he does them almost like he has to or has no control over it.  Sometimes he even fusses after the episode.  The therapist said she recorded it 30 times during her last 4 hour session with him.  Please lift him up in prayer if you think about it and pray specifically for answers from the doctor.  Whatever this is, I know God is in control.  If it is stimming, he has increased it by double at least and that makes me wonder why or what's wrong. There are always a million unanswered questions with autism.  
To end on a good note, Jacob did do something amazing this week!  Tyler and Cret always play sword fighting with light sabers.  Jacob usually watches them light up and runs in circles or grabs one and starts licking it.  This week he picked one up and started fighting.  He actually started playing with Tyler in an appropriate way! It was awesome.  Cret screamed for me to run in and see him.  We both were in tears.  The surprise of seeing our 3 1/2 year old playing in an appropriate way, even for a moment, is sheer joy. Glory to God. I'm so thankful for Star Wars this week. LOL


Sunday, December 8, 2013

How can someone say autism is a blessing?


How can I say that autism is a blessing? This issue does cause tension for some special needs parents. Some say autism is horrible and they wouldn't wish it on anyone, some say not to get therapy and let the child be who they are and yet others say autism is a blessing. People say it so often about hard issues that it sometimes sounds very cliche. You always hear, "You never know what God has planned".

 But that's not why I say autism is a blessing. I say it because I truly believe everything boils down to purpose or the end goal. What's my purpose? What is the end goal for Jacob, our family, our lives? I guess from a typical perspective the end goal should look something like Jacob being able to speak, learn, eventually be in class with his peers, go to college, have a nice job and marry. While all of those things are wonderful, that is not our family's primary end goal. Our end goal is to give glory to God in all that we do and to try to honor God by spreading the Gospel. We are not perfect and we most definitely do not live up to this all the time.  However, our goal is to let God use us in whatever ways He chooses to bring people into a saving relationship with Him. I feel humbled and honored because recently the Lord answered a deep desire of my heart. It's been a while now that I have been praying for God to use our situation as a special needs family and Jacob for His glory. I've prayed for God to use our situation and that if even one person hears about the Lord or comes to Christ through this autism journey it's all worth it. No, it's not fun, it is not easy and I wouldn't wish autism on any child, but if God can use it then I want to be at peace with it fully.  Several weeks ago a woman accepted Christ in a special needs Bible Study that I attend. There are no words to express how amazing it is to see someone accept Christ, especially someone hurting and knowing that their life will change in such profound ways. On that day God not only saved her, but he gave me a gift that I can hardly even think about without crying. He showed me the end goal. Instead of just praying about it and thinking about it God showed me right in that very room that even autism can unite people together where the Gospel can be shared and Christ received. Although she received the greatest gift that day I can't help but to get on my knees and thank the Lord for allowing me to see that. That is exactly why I can say autism is a blessing. It not only opens our eyes to the wonderful gifts that special needs people have and the need  that is out there for these families, but it opens doors to share Christ's love and peace and joy in situations where it is extremely hard to find happiness.  I can honestly say that most special needs parents feel that there is little worse than watching your child suffer or watching your child struggle with things that would normally be very simple and easy for others.  Autism is not what I want for Jacob.  Everything in me wants Jacob to be typical.  Everything in me wants Jacob to be able to easily communicate and be safe physically.  However, my prayer is that I can have a devoted surrender (as my Pastor put it today) of my life to the Lord, even in my desires for my child.  I want to have a heart that is willing to grant permission for the Lord to use my family, even my child, in whatever way brings the Father glory. I don't feel that this means not helping my child in every way that I can, but it does mean having a thankful heart and a heart willing to use Jacob's autism for bringing glory to God.  It means setting my desires for things that are for God.  My priorities often get a little out of whack.  This is my prayer...
"If then you have been raised with Christ, seek the things that are above, where Christ is, seated at the right hand of God. 2 Set your minds on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God."  Colossians 3:1-3


1 Peter 3:14-15 says," 4 But even if you should suffer for righteousness' sake, you will be blessed. Have no fear of them, nor be troubled, 15 but in your hearts honor Christ the Lord as holy, always being prepared to make a defense to anyone who asks you for a reason for the hope that is in you; yet do it with gentleness and respect"

There are so many special needs parents, grandparents and children hurting and lost and without hope and there is an answer for them.  Real joy and hope come from Jesus and Jesus alone.  It doesn't come from anything that I do, it doesn't come from more education or therapy or new skills Jacob learns.  I say autism is a blessing because Jacob and his autism allow me to relate to other parents and show them there is still an immeasurable joy in my heart despite these challenges through Jesus and nothing else.

Jesus declared in Matthew 11:27-30, " 27 All things have been handed over to me by my Father, and no one knows the Son except the Father, and no one knows the Father except the Son and anyone to whom the Son chooses to reveal him. 28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.”

We all sin. Romans 3:10-12 says, "10 as it is written:“None is righteous, no, not one;11  no one understands;no one seeks for God.12  All have turned aside; together they have become worthless; no one does good,not even one.”


Our sin separates us from God, who is perfect and without sin. Romans 6:23 says,"23 For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord."

 Jesus' death, burial and resurrection was the perfect sacrifice to reconcile us with the Father and all we have to do is repent (acknowledge our sin, to be sorry and turn away from it) and allow Jesus to be The Lord of our lives and accept this free gift. Romans 5:8 says,"but God shows his love for us in that while we were still sinners, Christ died for us." Romans 10:9-10 says,"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."

Once we accept Jesus, the Holy Spirit lives insides of us and we get to live an eternity in Heaven with God. It's so amazing to know the purpose of life. It's amazing to know the joy that only comes when you are free from the bondage of sin and living with a personal relationship with the creator of the universe. You are no longer dead in your sin, but alive in Christ.

I had to share my journey because I have been so touched to have witnessed it. I am so thankful to God for granting me the gift of seeing someone accept Christ through a special needs ministry. It's not that I didn't believe or think it could happen, it happens anywhere. I'm just so grateful. Praise The Lord from whom all blessings flow. God is so good.


Psalm 34
I will bless the Lord at all times;
    his praise shall continually be in my mouth.
My soul makes its boast in the Lord;
    let the humble hear and be glad.
Oh, magnify the Lord with me,
    and let us exalt his name together!

I sought the Lord, and he answered me
    and delivered me from all my fears.
Those who look to him are radiant,
    and their faces shall never be ashamed.
This poor man cried, and the Lord heard him
    and saved him out of all his troubles.
The angel of the Lord encamps
    around those who fear him, and delivers them.
Oh, taste and see that the Lord is good!
    Blessed is the man who takes refuge in him!
Oh, fear the Lord, you his saints,
    for those who fear him have no lack!
10 The young lions suffer want and hunger;
    but those who seek the Lord lack no good thing.
11 Come, O children, listen to me;
    I will teach you the fear of the Lord.
12 What man is there who desires life
    and loves many days, that he may see good?
13 Keep your tongue from evil
    and your lips from speaking deceit.
14 Turn away from evil and do good;
    seek peace and pursue it.
15 The eyes of the Lord are toward the righteous
    and his ears toward their cry.
16 The face of the Lord is against those who do evil,
    to cut off the memory of them from the earth.
17 When the righteous cry for help, the Lord hears
    and delivers them out of all their troubles.
18 The Lord is near to the brokenhearted
    and saves the crushed in spirit.
19 Many are the afflictions of the righteous,
    but the Lord delivers him out of them all.
20 He keeps all his bones;
    not one of them is broken.
21 Affliction will slay the wicked,
    and those who hate the righteous will be condemned.
22 The Lord redeems the life of his servants;
    none of those who take refuge in him will be condemned.


Tuesday, September 24, 2013

Sweet sweet little guy

video
Jacob has really been learning so much in therapy lately.  It amazes us how far he has come with only 4.5 hours of therapy per week.  It really makes me wonder how much he would be learning if he had full time ABA.
Earlier today I was looking back at previous blog postings and found some posts in which I believed Jacob had autism at around 10-11 months! For some reason I had forgotten that it was that early.  I always tell people that I realized it around 15-18 months.  You know, this gives me a lot of hope. If the early warning signs can be shared with as many people as possible, then intervention can begin as young as 1 year old.  Research shows that early intervention is key.  No longer is it ok to take the wait and see approach.  Early intervention cannot hurt a typical child.  It will help anyone, including typically developing children.  I just wanted to encourage you to always share early warning signs and red flags with anyone who may suspect autism.  If we hadn't begun early intervention when we did, there is a significant chance that Jacob would still be non-verbal and not gaining the critical skills that he has learned through therapy.  Jacob is still considered severe, but I am so incredibly thankful to God for how far he has come. 






We had family pictures taken by a sweet friend.  She is so talented and able to capture the cutest pics of Jacob, even with him moving and running around at 90 mph.  She chases after him and catches the sweetest smiles.  Of course, my other two are naturals.
Today I am making it a point to pray and thank God for our many blessings.  Of all of those blessings I am so so thankful for a such a lovable little guy.  I am thankful for his sweet nature.  I am so thankful that he snuggles and hugs and kisses.  Praying today for those families with autistic children that do not like to be held.  I can only imagine how you must feel.  I pray that your little one can learn to show you how much they love you in their own special way.  How about today we all take a moment and pray with full thanksgiving in our hearts to the Lord and Creator of our children, for everything they are and for his perfect plan in our lives.  Let's give thanks for our special children, our typical children and our children in heaven. 

http://www.youtube.com/watch?v=RWJLy3-iRQo
Matt Redman

"10,000 Reasons (Bless The Lord)"
[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

[Chorus]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore

[Chorus x2]
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

Jesus, I'll worship Your holy name
Lord, I'll worship Your holy name

Sing like never before
O my soul
I'll worship Your holy name
Jesus, I'll worship Your holy name
I'll worship Your holy name

Tuesday, September 10, 2013

Much to consider



WOW! A lot has been happening lately.  Jacob has begun special education.  So far, it is going really well.  Every day I pick him up and he is humming or trying to sing the songs that he has learned in school.  His verbal imitation is really improving.  He will imitate most anything you ask him to say and some common phrases.  I have attached a video of him trying to say "I love you, Mommy" with my husband prompting him by not letting him flip until he says it.  It is so precious to hear these words.  I can't wait until he knows what he is saying and actually says it to ME! They have begun potty training him at school and are currently working on getting him to sit still for a short amount of time during his school work or lunch at a desk.  We are also still receiving ABA 3 times a week, which of course is amazing for him.  I am hoping that somehow we can get him more ABA soon.
video

Man, I have had a lot on my mind lately with all the new changes.  With Jacob beginning special ed and his stimming increasing it's all seeming a little more real... I don't know why, but sometimes I feel like I am on a emotional roller coaster regarding Jacob's needs.  Sometimes my heart (my emotions) seem to take over what I know to be truth.  The other day I was thinking about when Jacob was an infant and everything I did (or didn't do).  I was considering things that I should have done differently and once again I got that feeling in the pit of my stomach.  There's absolutely nothing like it.  It's an absolute desperation to just go back in time.  If I only had those infant years back.  It literally made me feel ill.  I was telling my mom about it and just started crying.  What I wouldn't do to help my little guy.  Why didn't I realize then that something was wrong?  Why was I sleeping so much?  Why didn't I try to force eye contact, etc?  I hear this a lot from special needs moms.  There is a guilt that sometimes takes over, even when you know you couldn't change the outcome.  But I realize I have to be really careful when these thoughts arise.  I keep condemning myself.  Over and over in my life I struggle with who I was or what I have done.  A person like me, with my past, has a lot that can creep up to haunt me.  What I could have done differently with Jacob is no exception.  Sometimes thoughts of my past keep me up at night.  As I was reading in one of my Bible Studies I came across a verse...

By this we shall know that we are of the truth and reassure our heart before him, for whenever our heart condemns us, God is greater than our heart, and he knows everything. 1 John 3:19-20

When I surrendered my life to the Lord he forgave me.  All of my past is forgiven.  All of it, and he knows everything.  If you asked the Lord to rule over your life and repented, then all of your past is forgiven.  Whatever you may have done, could have done or should have done does not need to burden you.  You don't need to even forgive yourself, because the Holy creator of the universe already knows all and has forgiven you.  Its so wonderful to know that no matter how strong my emotions can be, God is stronger.  That's amazing to remember when I get down on myself.  I trust that God's word is TRUTH and because I do I need to trust that all is forgiven.  Obviously, learning from mistakes is important.  Living in the past, however, is not productive or helpful.  

Again, in a similar way, I sometimes find myself praying so hard for the Lord to heal Jacob.  I pray while crying out to God to heal my baby.  I pray for Jacob to have the ability to learn like other kids, to speak like other kids, to play like other kids, to eventually be able to live on his own or to get married.  I pray for God to take this cup from him, from us.  But again, I read in his word that there are things that are bigger than us and our comfort of living.  I remember I need to be praying that if its in Gods will that he heal Jacob, but if not, if God can use Jacob's autism for something that could enhance HIS kingdom then to guide me and use us for spreading HIS good news and love.  If Jacob's autism can be used by God to glorify himself than I pray that God will use it and continue to forever.  How incredibly hard it is to keep reminding myself that my will may not align with Gods.  I have to surrender my will and trust HIM.  God has a better plan for us than I ever could.  I need to be in constant prayer that I can see Gods will for us and the path he wants us on instead of constantly focusing on prayer to heal Jakey.  I will continue to educate myself and to help him learn in all the ways that I can, but I want to clearly see what God would have for us and that is done through reading Scripture, prayer, and fasting.  Have you considered asking God how he can use your child and your situation for His glory?  God is so mighty and so just and so loving.  

Remember not the former things, nor consider the things of old. Behold, I am doing a new thing;  now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert.  
Isaiah 43:19-20

God will make a way for you, even when it seems so hard and painful, God will make a path and quench your thirst.