Wednesday, May 23, 2012

Early Detection of Autism

I created a video about Jacob in order to teach people some of the early signs of autism.  Early detection gives children with autism their best chances of success.  Please watch and please consider donating in Jacobs honor to help fund the research we so desperately need.  www.walknowforautismspeaks.org/houston/rejoiceforjacob

Click the link below to view the video:

http://smilebox.com/playBlog/4d7a45324f5449324f54513d0d0a&blogview=true

Wednesday, May 16, 2012

Not my will, but yours.

This mother's day was such a wonderful reminder of God's magnificent gift of motherhood that He has given me.  Sounds silly, but for some reason this mothers day I really did reflect on how special it is to be a mom.  I also got another reminder of who I should be modeling myself after as a mother, a wife and a child of God.  In Bible Study this past Sunday we were discussing how Jesus, in agony, before he was crucified prayed to God....

..."Father, if you are willing, remove this cup from me.  Nevertheless, not my will, but yours, be done."Luke 22:42

It pulls at my heart in a way I can't explain each and every time I read this.  Not my will, but yours.... How many times have I prayed this?  Hundreds.  How many times, though, have I prayed this and still really believed and prayed for God's will to be my own?  Hundreds.  I know I can hope for Jacob to get better, but I want to have a heart that truly desires Gods will and not my own, even at the expense of Jacob remaining disabled.  How can I allow God to use his autism for His glory truly if I don't even believe his autism is Gods plan for us, at least for now?  I guess it boils down to trusting God and being content.  I want to fully trust in God and His plan. 

Thinking about trusting God and who He is and what He has done brought another thought  to my mind, that I just couldn't shake.  Who is this Jesus that I am trusting?  Well, he is holy, righteous, perfect, loving, powerful, mighty, infallible, miraculous, just to name a few.  But as Jesus was in agony  (which as we discussed in Bible Study showed his humanity) awaiting his death and about to endure something so horrific words cannot even do it justice, He prayed "not my will, but yours".  WOW!  He could have saved himself so easily, but chose to die and let His Father's will be done.  Yeah baby, that's the God I serve! That's the powerful, brave, and mighty God I need to put my full trust in.  It just amazes me that I so easily forget what He had to endure and so quickly think that what I am going through or what Jacob will go through is so hard and unfair.  Changing my heart to a heart of thankfulness has proven to be a challenge during all this with Jacob, but BOY do I need to.  The more I discover about God the more I see how blessed I am and how AWESOME HE IS!  So while I know I will have more heartaches through this journey with little Jacob I just ask that if you know me and I am complaining or sad, kindly remind me of the God I serve and the God that loves me.  Hopefully that should remind me that while I can be sad, I need to remain thankful and trusting in Him.  Remind me about what Jesus was about to endure and how he responded.  I want to boldly and bravely and honestly say to God "Father please heal Jacob, but if that is not your will, please let yours be done".

I love being a mom, even a mom of an autistic child.  It is the most difficult thing I have ever had to do, but its worth every second.  Thank you JESUS for these children.  Thank you JESUS for suffering the cross and conquering death for our salvation.  Thank YOU!!!

While I'm in a delightfully happy mood I would like to also list out some great improvements that Jacob has made.  Jacob will on demand repeat dada, a, u, and hum the uh oh tune.  He doesn't yet know what dada is, but I am so happy that he is repeating after us!!! He also is beginning to look for the milk pec to point to it when he is thirsty.  During therapy, he will put a ball in a bucket when I say "put in" and most of the time will take it out when I say "take out".  He will drive a car the proper way when I show him how and say "do this".  He also will clap when I ask him to most of the time and he can distinguish a few items by name.  We are working on him holding a crayon and marking on paper, but he isn't there yet.  He pops balloons on the IPAD that was donated to us and is working on counting games, which is a big step since at first he only wanted to put his feet on it....  So he is learning and moving forward, very slowly, but indeed moving forward.  I am so thankful for that.  We haven't received the results of the fragile X test, but I really am not expecting it be fragile X at all so I haven't been nervous.  Thank you for your continued prayers.  I pray for every mommy of a disabled child every single day.  My heart goes out to you more than you know. 

Friday, May 4, 2012

Social Security has declared Jacob disabled

Thursday Jacob went in to the pediatrician for his 18 month well check up.  As of today Jacob is 22 months. We were a little behind.  As I was filling out the form for his evaluation, my heart sunk again.  I had to check no for every single 18 month milestone except that he was walking and running.  I had to stop myself from getting choked up and I just reminded myself that God made him special.  It never feels right filling out those check lists.  Its just a terribler reminder of how far behind he is.  The main questions were regarding him making good eye contact, having words, pointing for things he wants, reacting to his name and reacting to simple commands.  He can't yet do any of those things.  I asked the doctor if him repeating dada after me counted as his first word, but she said no.  It won't count as a real word until he knows what he is saying.  Praying for that first word soon.  I really hope he will say momma or dada to us when he turns two, but if not thats ok too.  We also went to Texas Children's to get Jacob's blood drawn for fragile x genetic testing.  We will know the results within 2-3 weeks.  I am so happy and thankful that we will finally have an answer about it.  Do I think he has fragile x? No not really.  I know the chances are pretty small, but it will be nice to know for sure.  I have decided not to even think about what it means if he does have it until I know for sure, because I don't need the added anxiety.  Up until today I have been feeling pretty encouraged and positive.  I was just hit with a bomb and am still processing it. 

We recieved a letter in the mail today from social security disability.  I applied for disablity income because getting approved for even $1 a month ensures Jacob insurance.  I even got a call from his case worker when he was working on the approval and he said that things looked good for Jacob to be approved.  Well....the letter stated that as of February of 2012 they have officially declared Jacob as a disabled person, but that they denied him of social security disability due to our family income.  I feel like I've been kicked in my gutt.  I really can't remember crying so hard in such a long time.  Thankfully Cret was there when I read it and as I sobbed he held me.  He told me it would be ok, but I just couldn't hold back the tears this time.  Where do I go for help now?  He is disabled and he can't get disability insurance??? I don't understand.  Our insurance won't cover his disability and social security disability won't cover him.  Where do we go from here?  I feel so confused and lost.  Like I am this deep water and I can see the life preserver but I just can't reach it, no matter what I do.  I have tried everything I know to do to be Jacob's advocate, but I can't get him the help he needs.

I started thinking about my relationship with God tonight.  There is a bigger plan at work here and I have to trust Him.  I am just hurting I guess.  As I was driving home from a birthday dinner tonight, it was as if God could hear my cries and the perfect song came on and the end of it just sang to my soul.  God I trust you.  If you want the waters to rise around me, so be it.  Let the waters rise and I know you will bring me to higher ground, God.  I trust you in this. 

Please say a prayer for my sweet Jacob.  If it is in Gods will I would love for Jacob to be able to have insurance that covers his disabilities.  However, I trust that Gods will is the best and insurance may not be what best glorifies God's kingdom.   Thank you for your prayers. 

http://youtu.be/W8kiMBaFaA8

Let The Waters Rise lyrics
God, I trust You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to
I will follow You
I will follow You
I will follow You

I will swim in the deep
'Cuz You'll be next to me
You're in the eye of the storm
And the calm of the sea
You're never out of reach

God, You know where I've been
You were there with me then
You were faithful before
You'll be faithful again
I'm holding Your hand

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to
I will follow You
I will follow You
I will follow You

God Your love is enough
You will pull me through
I'm holding onto You
God Your love is enough
I will follow You
I will follow You

Ohhh

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If You want them to
I will follow You
I will follow You
I will follow You