Wednesday, August 31, 2011

Our appointments today

I woke up this morning with a call from centralized showings saying that someone was requesting a showing today from 1-3pm.  While that was super great news it meant I had to get myself and my boys ready to head to the neurologist across town and clean my house all before 8am.  Nevertheless, I got it done and was out the door.  I called the office and told them I was probably running 20 minutes late and they said that was ok.  When I got there, they told me that I had gone to the wrong office.  They had said the Katy location, not the Memorial City location on the Katy Freeway.  Honestly I had no idea there was another office.  So they said the earliest appointment in Katy was 1:30 and I took it.  It was 10am.  I had to be seen today because we have a $500 deductable every month for our insurance and we had already met it so this visit would be covered since it was the last day of the month.  Now I had to find something to do between 10 and 1 so we headed to the mall to look around and then eat lunch.  The mall is not a happy place with a 1 and 2 year old, but we got through it.  We arrived at the Katy location by noon and I let the boys sleep until our appointment.  When they took us back to the room the nurse told me it was going to be $210 for the visit.  I told her that we had already met the deductable when we went to TX Childrens for the MRI.  She said that it takes 4-6 weeks for those payments to post to our insurance so they would have to collect the money from me and if in fact we had met our deductable they would reinburse us.  UGH.  Do I spend our grocery money?  Will we get the money back in time for when we need it?  Too many unknowns so I had to reschedule.  I asked if they could just call TX Childrens to confirm we had met the deductable, but they decided that wouldn't work.  Rescheduling means I have to pay another deductable next month.  It also means that I totally wasted my day.  I was trying so hard to fight back the tears as I left the office and once we got on the road they came pouring down.  I was crying and crying and crying and then I heard Tyler say, "Momma whats wrong?"  I tried to look back and smile at him with tears rolling down my face and gasping between breaths and I must have looked so crazy.  He just gave me a little smile and kept repeating, "Whats wrong?"  Man I hope this is one of those memories he won't remember when he is older.  Why couldn't I hold it together until I was alone?  Well, anyways I am so happy and thankful that church is tonight and I can go and hear from the Lord.  I am so thankful I will get to see some of those super sweet people that have been so kind and loving and encouraging to me.  One day at a time.  I am not going to worry about next month or even tomorrow. 

"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." Philippians 4:6-7

Tuesday, August 30, 2011

MRI Results

We got the results for Jacobs MRI about a week ago.  I have been meaning to blog it, but honestly I have been so busy and so worn out emotionally.  The neurologist called me and told me that everything looked normal except that Jacob's brain was 2mm below his skull.  I don't know what that means, but she said they don't do anything about it until it is 5mm or more.  We have another neurologist appointment tomorrow so maybe she will explain then.  The insurance company hasn't decided if they will cover the blood tests or genetic tests yet so we are waiting for that.  Those tests will determine metabolic diseases, encephalitis, fragile x, ect.  The neurologist told me that its very normal for autistic children to have rapid head growth in the first year of life.  Since she told me that I have researched and read at least 10 journal articles about the positive correlation in head growth between 2 months of age and 12 months and the severity of their autism.  Obviously, this is not good news.  I don't know if I have ever cried so hard then when I was reading all of that.  His head went from the 25th percentile to the 98th in a few months.  I don't want him to be severely autistic.  I just want a normal healthy baby.  Meanwhile, all his ECI therapists and the consultants from Houston ABA and his doctors have been telling me that he needs to be in intensive therapy asap.  His brain is still very mallible until the age of 3 so intense therapy can actually make him almost mainstream by then.   So Cret has been feeling so stressed about money because we don't have the money for even a little bit of ABA therapy and I have just been so sad.  I feel like screaming "SOMEONE HELP MY BABY PLEASE!!!!" Why can't I get him the help he needs?  I feel so helpless.

Its been a while since I have blogged.  I have been having such a hard time lately with so many areas in my life.  First of all how do I call the people that I can talk to about this now that the "newly diagnosed' stage is over.  What do I say to them?  "Hi I'm still sad.  Jacob still has autism.  I think about it everyday and I can't really do anything?"  Additionally, some people aren't reacting the way I expected and aren't being supportive like I had wanted.  I started feeling resentful about it.  I started feeling so alone.  I was expecting people to react the way I would, or the way I thought was "right".  It was making me judgemental, resentful, and so sad.  Its funny how when I started going through all this I started thinking people should focus on me. I was hoping for all this extra support from people close to me, meanwhile not thinking about what they may be going through or dealing with.  I was just being selfish.  I have come to realize that I need to be thinking about the kind of person God wants me to be.  I need to let God use me in my relationships.  I am Gods child first, then a wife, then a mother, then a family member, ect.  I need to turn my focus back to Christ.  Moreso, I need to forgive.  I need to let it go.  I can see that God is trying to show me that HE is all I need.  He is my portion.  If I had thousands of people to turn to every single day with every issue right now would I be turning to my heavenly father?  Its funny how when we go through a crisis we become so selfish.  All of a sudden my prayers are filled with pleas instead of praises, my desires are for my husband and my family and my friends to fill my needs.  Its so hard, but I have to figure out a way to stay focused on my 1st priority...Jesus....not me, not Jacob.  So that's my prayer this week.  I am really feeling so weak and so tired and so sad. 

I need you, God.  I have never needed you like I need you now.  I feel so lost and so desperate.  My baby needs help and we can't help him.  Please help me to focus on You.  You are so awesome.  Blessed be Your name!

I read a book called Help For the Caregiver  by Michael R. Emlet and it was so awesome I just had to share the 3 amazing parts that touched me so deeply....
                       "The gospel is about renewing the true image of God through Jesus (Ephesians 4:24, Colossians 3:10).  This process is not derailed by illness and disabililty.  Instead, God uses these things to make us more like him.  God promises he will complete the work he began in each of us (Phil 1:6).  This means that God is doing his transforming work in the person you are caring for and also transforming you as you face the challenges of caregiving.  He is perfecting the character of Christ in both of you in the midst of your struggles."
                      "The concentration camp survivor Victor Frankl said,"When we are no longer able to change a situation, we are challenged to change ourselves."  You may not be able to change the chronic, life-altering aspects of your loved one's physical or mental struggle, but you can be sure that God is intent on transforming you more fully into the character of Christ as you care for your loved one."
                       "Providing holistic care to someone whose chronic illness you cannot fix is both difficult and redemptive at the same time.  Let Paul's words encourage you today:  "Therefore, my dear brothers, stand firm.  Let nothing move you.  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain" (1 Corinthians 15:58).  God has entrusted you with a unique opportunity to  minister the gospel of Jesus Christ in both word and deed.  Although you may sometime feel that no one knows what you are going through, God sees you.  He knows all about your struggles and sacrifices and he is with you, ready to help you in your time of need."

God is with us.  I re-read this and I think of the special moms God has put in my life that are going through similar situations and I pray for peace and for God to show you and me that this is a ministry.  Our precious babies have these illnesses for a reason that we may never understand, but let us be strong today and every day in our faith and continue to praise God.  I know its hard.  Sometimes I feel like this is not real.  I seriously just wonder how can this be happening.  Surely Jacob is going to be fine or surely our house will magically sell tomorrow so I can get my precious baby help, but it doesn't and he's not and I need to be content.  I need to trust God.  Trust and faith.

Wednesday, August 17, 2011

Asking for Prayer

Today is a big, scary, important day.  Jacob is going in for his MRI.  His procedure is scheduled for 2:30 at Texas Children's Hospital.  I had to wake him up super early to eat because they told me he can't have any food or milk after 7am! He can have water until 11am.  The whole not eating thing makes me nervous because he gets so upset when he is hungry.  A friend of mine told me that the major problems that occur in surgery are usually due to people not following the eating and drinking instructions, so I am following them perfectly.  In addition, they are putting him to sleep during the MRI.  The procedure is 45 minutes and the nurse told me that the person doing it may take longer if needed or add dye to see anything more in depth.  They are looking for brain abnormalities, brain damage, mental retardation, gaps, and whatever else they can see.  Nevertheless, today I'm a mess.  I just wanted to ask all of you out there to pray for him.  Please pray specifically for a successful procedure and that whatever may be wrong...that they can see it with no problem.  This test could be a big deal and give lots of answers or it could just cause more questions.  I don't like the unknown.  I hate not being in control.  I hate not being able to make my precious baby well.  But I am going to choose to trust God because he IS in control.
  Thank you for being holy and just.  This situation with Jacob is so far out of my comfort zone.  I have no idea what to even think or do.  I am so thankful that this isn't unknown to you.  You know how many hairs Jacob has on his head and he is your child.  I am trusting you with him.  I am only borrowing Jakey from you and I pray that you give me the tools to care for him if its your will.  I pray for the doctors today and all the days of his life.  Please heal Jacob or give us peace about his condition.  I love you and thank you so much, every day, every second for this wonderful child.  He is fearfully and wonderfully made. 

As the women at Bible study reminded me last night...

I have all kind of crazy emotions right now.  So many I can't even describe, so I have to hold on tight to what I know is true and right. I have to hold on tight to my God and trust in His word and His promises.  He will never give me more than I can handle.

"I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well." Psalm 139:14

Jacob is fearfully and wonderfully made.  God, knowing he was a special needs child, gave him specifically to me.  What an honor and blessing from God.  What a compliment that he trusts me with this precious child.  I will faithfully take care of him and lean on God when I have no idea what to do.  I hope you realize that too.  God gave you this amazing child to care for.  He knew this child needed extra care and extra attention and YOU were the mom he chose for the job.  What an honor.  Praying for the other moms having a hard time right now.

Sunday, August 14, 2011

I don't want to be my child's therapist all of the time

I’m constantly researching new ways to help Jacob learn.  I watch videos on therapies and read books. I have started to notice that I can’t even be in the same room with Jacob without evaluating him.  I watch how he looks at me or how he is reacting to his daddy or brother.  I see if certain sounds make him scared or if certain songs I sing make him look at me for longer than a second.  I went to a birthday party at Chuck E Cheese the other day and there was a 9 month old baby there and I was watching her clap her hands and smile at her mommy.  I found myself comparing every detail to Jakey.  I always find myself comparing.  In the nursery at church I watch all the younger babies looking at their mommies when they come pick them up.  It’s hard.  I want Jacob to look at me like that.  I want to say clap or patty cake and for him to just clap.  But that never happens.  The more and more I learn the more I try to be his therapist all day long.  It’s grueling and defeating.  I think I have come to the conclusion that I don’t want to be his therapist all day.  I want to work with him, of course, but I think I am going to have to draw the line some where or I am going to go nuts.  I can’t be therapist and mommy.  I have to learn to stop over thinking, over evaluating, over working him and sometimes just be loving mommy, but even saying that I feel like if I’m not working at it every minute with him then I am letting him down.  They say that therapists work through play, but as a mom I know it’s not entirely so.  The way I play with my kids isn’t with constant reinforcement and constant repetition, its just being silly and loving and pretending.  So where do I draw the line?  When do I turn therapist off and mommy on?  That’s my question.  What do you do moms out there?  How do you ever stop thinking about it for even a minute?  I just wonder when and how this will get emotionally easier.  Every song at church makes me cry, every commercial with “normal” kids makes me cry, and every time I see a baby younger than Jacob and meeting milestones I think of Jacob and just feel so sad.  Today in church we studied Psalm 42 and that during every tragedy God is with you, and that God either allowed it to happen or caused it to happen for reasons that most of us could never understand.  Additionally, God loves us.  God is not malicious.  He has a purpose for all of this.  I get that.  Even before I got Jacob’s diagnosis I knew that God would do what he wanted with our family and I trusted that.  I still trust God.  It gave me reassurance to know that other followers of Christ can be hurting and sad and still love God and trust God.  I think that’s what I was feeling guilty about for a while.  Does my sadness mean that I don’t trust God?  No.  God allows us to be sad or hurting.  The thing that is so awesome is that God is always with us during these tragedies.  He will never leave me.  I will continue to trust that He is doing what’s best even though I don’t understand it.  It gives me peace to know that God loves me and He is right here with me every step of the way.  Today I have to also include that while playing patty cake for the bazillionth time Jacob actually kept his hands together when I let go after clapping them for him.  This was a huge step because usually he immediately pulls his hand apart like I was hurting him or something.  Additionally, he has found a new way to communicate with me.  When I swing him and I stop his swinging he kicks his legs at me to tell me to swing him more.  Its so cute.  He never looks at me or implies he wants anything except reaching for the bottle and finally he was trying to tell me something.  Very cool.  Baby steps....

Wednesday, August 10, 2011

Why bad things happen to good people and Jacob's new diagnosis

Jacob’s nurse called me yesterday and gave me some good/bad news.  After finally discovering the insurance would not pay for the medical testing needed our neurologist decided to dig deeper into Jacob’s medical records to see if there was any indication of a medical problem, not just psychological.  After all, the whole reason she wanted that testing done was not to re-diagnose autism, but to make sure he didn’t have an underlying medical issue causing autism.  After reviewing his rapid head growth and virtually no growth in his body weight and length she determined that he has macrocephaly.  The definition for this is “a congenital anomaly characterized by abnormal largeness of the head and brain in relation to the rest of the body, resulting in some degree of mental and growth retardation. The head is more than two standard deviations above the average circumference size for age, sex, race, and period of gestation, with excessively wide fontanels; the facial features are usually normal. The condition may be caused by some defect in formation during embryonic development, or it may be the result of progressive degeneration processes, such as Schilder's disease, Greenfield's disease, or congenital lipoidosis. In macrocephaly there is symmetric overgrowth at the head without increased intracranial pressure, as differentiated from hydrocephalus, in which the lateral, asymmetric growth of the head is caused by excessive accumulation of cerebrospinal fluid, usually under increased pressure. Specific diagnostic tests may be necessary to differentiate the two conditions. Treatment is primarily symptomatic, with nursing care concentrated specifically on helping parents learn to care for a brain-damaged child. Also called macrocephalia, megalocephaly. Compare microcephaly” (The Free Dictionary by Farlex) There are a lot of things that can cause this, mostly medical.  She told me that they have a copy of our insurance and that it should cover all the tests we need with this diagnosis and that our doctor had 2 other neurologists look over his records to ensure accuracy.  It indeed may be caused simply by autism and if this is the case we will still pay for therapies ourselves, but if it is a disease causing this and his autism there may be some form of medical treatment.  Right now the insurance is deciding still if they are even going to cover the testing.  This is so beyond my understanding.  I want to say, “Please just help my baby!”  I don’t really know where we go from here.  I am just praying and thanking God that we hopefully are getting somewhere.  If just these tests are covered that will help our family tremendously.  I want to thank everyone for their prayers.  The outpouring of love that my husband and I have been shown is just beyond imaginable.  God has revealed himself to me in so many ways lately and I am just in awe.  My precious baby is going to get the help he needs one way or another, I just know it.  I was talking to a friend the other day and she was so confused as to why bad things happen to good people.  I think that’s such a common question.  If we are following God and doing our best to honor Him why are these things happening?  Well, as far as what I have already witnessed, God is using my precious Jacob to move people.  God is using Jacob’s story to help other families realize that their kids may need help.  God is using Jacob’s illness in order to allow me to share my testimony.  God is using other people to show me Christ’s love.  God is using this pain to draw me and my family into his arms.  God is using this to increase our faith.  And God is ultimately using this illness to glorify Him.  If Jacob’s brain damage or autism or whatever it may be causes one person to come to Christ or renew their faith then I willingly accept the pain and work that comes along with it.  I wholeheartedly give Jacob to God.  Even saying this I am in tears because Jacob is my precious baby, but I asked God a while back when I felt myself becoming apathetic to do something to bring me closer to Him.  Never did I imagine it would be something like this, but it has.  It’s drawn me so much closer to Christ.  I am so thankful for it.  Through my pain I am going to praise God and trust that this is for His glory.  So if you are a Christ follower and you love and trust God and you are enduring something similar, I hope you find comfort in the fact that when you gave your life to Christ you gave your life for His glory so that ultimately His kingdom can grow.  God is using this to grow you, grow others, or his kingdom.  God never promised us a life without heartache and in fact Jesus tells us we will endure pain…John 16:33 “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.” Isn’t that awesome! God has promised his followers everlasting life with Him in heaven.  “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him.” 1Corinthians 2:9  I am praying for resolution, but willing to wait until God has used this for whatever reason He chooses, if it ever ends in this lifetime.  Please pray for strength.  I write these things and I am feeling encouraged and trusting in God and it seems as soon as I take another breath something has happened and getting me down.  I want to stay faithful even through my sorrow.  I love and appreciate everyone on board with us.  I know God can perform a miracle and heal Jakey and I hope that he chooses to.  Please say a prayer for my sweet little guy.

Tuesday, August 9, 2011

Your company and your insurance

This is a post all about insurance and what you need to know about autism coverage.  I have a friend, Tiffany, who has an autistic son.  She is fighting with her insurance and her company to get her sons ABA therapy covered.  She gave me a lot of information that may help you out there.  You may want to look up if your state has laws stating that autism and treatment must be covered.  You can find this at and then in the search engine type “autism and insurance coverage state laws”.  Then scroll down to your state.  Once you see if your state has a law, then you want to check if your company is self funded or fully funded and you can look up the differences at  Basically what she told me was “Self funded means the company has a pool of money that the claims are paid from. There is what is called a stop loss coverage that protects these companies from a very large medical claim. You can call the company and see if they opted for a stop loss plan. Then ask have you met that stop loss. It is worth a try. Once you are over the stop loss then the company can file the claim to that stop loss carrier which is mandated by the state law to cover autism therapy.”  Also, self funded insurances do not have to abide by the state laws only the labor laws.  Fully funded insurances do have to abide by the law.  In addition individual plans, at least in the state of Texas, do not have to cover autistic children.  Also, my friend told me that if you want to appeal to your company to cover autism you can contact autism speaks.  They have a presentation that basically shows that early treatment now will save the company tons of money in medical (not behavioral) expenses later on.  The good thing about a self funded company is that the company has the choice to add coverage to their plan.  Obviously no company wants to because it is more expensive, but sometimes I have heard that a letter to HR could work.  We (my husband and I) have decided not to appeal to his company.  We asked and they did not cover it and we believe it is because it was too expensive.  We feel very blessed and very fortunate to have a great job that my husband is good at and loves.  He loves his coworkers and I believe that if its possible in the future they may cover behavioral health, but until then we are on our own.  The crazy thing is that autism is effecting 1 in 110 (every site has different numbers) kids and this is still an issue.  I hurt for Tiffany who is fighting this.  Tiffany's son also has hemophelia.  That condition has the highest cost of any other childhood illness.  All she wants is therapy for her son.  She told me after she fights for ABA therapy to be covered she is then appealing for speech therapy.  Can you even imagine having an autistic child with hemophelia and the stresses of an appeal?  Please pray for her and all of us with no coverage.  Pray for the children mostly, because they are the ones suffering.  It is outrageous that we not only have to deal with a child with autism, but to also have to fight the insurance companies, and all the money problems, ect.... So good luck out there to all of you fighting this battle.  I know it is so stressful and painful, but I encourage you to turn to the Lord in times like this.  That is the only reason why I am still smiling.  Remember you are not alone.  There are many seminars you can attend to learn some basics of therapy yourself.  While I know that isn't as good as the "real thing" its a start.  Thats where we are starting.  We have been offered help from some amazing, smart women who are giving advise and even using their skills to try and help Jacob.  I am reading books on different therapies to get educated on how to handle him.  There are also ABA consultants that can come to your home to teach you how to start a program at home.  Its still expensive, but much cheaper than sending them to a clinic for therapy.  I am trying to contact a few people regarding that as well.  Lastly, you always have the option of trying to find a job that has group coverage.  Make sure it is a company that has fully funded group insurance and try to get covered.  In 2010 national law was passed that no child may be turned down due to pre existing conditions so your child should get coverage.  With all that said I ask, plead for you to pray for all the families with no insurance and also to say a special prayer for Tiffany and her son Wesley. 

For it is you who light my lamp; the LORD my God lightens my darkness.  For by you I can run against a troop, and by my God I can leap over a wall.  This God-his way is perfect; the word of the LORD proves true; he is a shield for all those who take refuge in him. Psalm 18:28-30

Monday, August 8, 2011

Walk Now for Autism Speaks: Houston!

Well I took the first step....I set up a team for the Autism Walk.  If you feel led to donate, anything would be appreciated.  Even a dollar gets us closer to a cure.  The shirts are $15 each or you can purchase them for $20 and the extra $5 will go towards the walk.  Just email me for info.  Our team website to donate in Jacobs name is  All of the money you donate will go directly to autism speaks research.  I feel so excited to be a part of something bigger than our family and something that will help more children than just Jacob.  At this point we can't really afford to get the kind of help we need for Jacob, but we can try to get funds for this foundation.  I hope you join us by donating or through prayer. 

Saturday, August 6, 2011

The Ups and Downs

I started a post last night talking about how having a child with a disability is such a rollercoaster.  Only the day before I was laughing and singing and posting about praising the Lord.  Then yesterday my world came crashing down.  Thats what being a parent of child with a disability is like.  A rollercoaster.  Crazy happy hopeful days and long stressful defeating days.  I was probably having the hardest day yet in this journey with Jacob.  The worst part about it was that I didn't know if it was even ok for me to be feeling sad and hurt and angry so that made me feel guilty.  We officially lost the battle with the insurance company yesterday.  Even with the neurologist on our side and her nurse looking into our coverage all day, the insurance finally said that they just weren't going to cover the tests.  Not only that, but the therapies we need won't be covered either.  In addition, I found out that $1200 per month only covers 10 hours a week of ABA therapy and most kids need 20-30 hours if they aren't in a school program and thats only 1 type of therapy they need.  They also need speech, occupational, special diets and sometimes medications.  Lastly, Jacob got sick again.  he had fever and the entire night his nose was stopped up and instead of finally realizing he needed to breath out of his mouth he would hold his breath, then gasp for air and then cry and cry.  This went on for hours.  I was really torn down.  I couldn't imagine anything worse than knowing you have a sick child and not being able to take care of them or give them what they need.  I am and was heartbroken.  But then I got a call from a lady who is on the board of a diabetes foundation.  She was telling me that she knew someone within the autism speaks houston chapter and gave me some info.  She told me that she knows how hard this is for me.  She said she gets calls from people who have lost their insurance and have no insulin for their children.  If these kids don't get insulin daily....they die.  Woah.  Here I am thinking nothing could be worse than my situation and I hear about these parents who now have to go to the emergency room every single day to get their kids insulin to keep them alive.  She then said that there were parents who chose to give their kids to the state just to keep them alive.  My heart is breaking for these people.  And while I won't dismiss the seriousness of my situation and I am going to allow myself bad days, I can't help but to see God giving me the proper perspective right now.  I know how hard this is for me, so I am only feeling a fraction of the difficulty of those parents.  So after I hung up I deleted my post that was a huge pitty party and sob story and just prayed. 
    God, please keep giving me the right perspective on this.  Help me fight this and help me give other parents a voice.  One way or another I need to make a difference.  Help me to make a difference in the world of autism and ultimately for your kingdom. Amen. 

After that I looked up on the autism speaks web site and found info on a walk to raise money for research going on in October in Houston.  I wanna do it.  I wanna raise money.  I don't want to just figure out how to get help for Jakey, I want to help every kid with this terrible diagnosis.  So now I need to pray for the right people to help me raise some money for this event.  They gave ideas such as a car wash, dinner, or even a lemonade stand to raise money for the walk.  I am already overwhelmed with everything, so I think I may do something small like a car wash, there has to be people out there that would donate for this wonderful research.  I am overwhelmed by the hundreds of people that have already viewed my blog and emailed me and what that tells me is that people are interested in autism.  It affects millions of babies.  It may already affect you or a loved one.  So I am praying for answers to what my role will be in this.  As far as practical advise for parents with kids with autism....I have decided to start a medical journal.  Many of you probably already have.  I want to take Jacobs temp and write his syptoms every day.  As I go through therapies and treatments I will continue to blog what helps us, although I know each child is different and needs different treatments.  I am still considering Doctor Goldberg at UCLA.  If anyone has more info on him I would greatly appreciate it.

Thursday, August 4, 2011

Today is the day

I decided I was going to blog this.  I'm beginning to feel like every day is going to be a struggle to stay positive and keep going.  I don’t have any new info on our insurance.  Nothing dramatic happened with Jacob today.  This is just something that is helping me get through today.  It may not work for tomorrow, but for now it is giving me joy.  My day started out as usual:  Jacob crying in the wee hours of morning, getting him up and changing his diaper while fighting with him to not eat our Pier 1 velvet pillow on our couch.  I really need to throw those velvet pillows away.  I can’t put Jakey near them without him trying to suffocate his face in them.  Then after I changed Ty and gave him food, we went to the table and I started to feed Jacob his yogurt and after two bites I had  to physically squish his cheeks to open his mouth to get him to eat…All this while he was frantically throwing his arms around to avoid taking bites.  Then I loaded the boys in the car and headed to my moms to give Jordan the clothes I forgot to leave.  On the way home I hear a song with the lyrics, “Today is the day You have made, I will rejoice and be glad in it.”  I started thinking about it.  Have I been rejoicing in the Lord?  Have I been rejoicing in anything?  Yes, I have been praying like crazy but I’m sad, lonely, and scared.  So I look up the verse in my Bible and read it and then reread it.  “This is the day that the LORD has made; let us rejoice and be glad in it.” Psalm 118:24….So I have decided today to not complain, to not worry about our circumstance, to keep praying with hope, and to rejoice and praise the Lord.  And you know what?  So far It’s been working.  I’m happier and I am getting more accomplished.  Will this work tomorrow?  I don’t know, but I’m going to try.  So I’ll share these lyrics with you and I hope you read them and have peace and joy…

I'm casting my cares aside
I'm leaving my past behind
I'm setting my heart and mind on You, Jesus

I'm reaching my hand to Yours
Believing there's so much more
Knowing that all You have in store for me is good, it's good

Today is the day You have made
I will rejoice and be glad in it
Today is the day You have made
I will rejoice and be glad in it
And I won't worry about tomorrow
I'm trusting in what You say
Today is the day
Today is the day

I'm putting my fears aside
I'm leaving my doubts behind
I'm giving my hopes and dreams to You, Jesus

I'm reaching my hands to Yours
Believing there's so much more
Knowing that all You have in store for me is good, it's good

I will stand upon Your truth
(I will stand upon Your truth)
And all my days I'll live for You
(And all my days I'll live for You)   
Lincoln Brewster
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Wednesday, August 3, 2011

Praying for a miracle...

I probably won't always be blogging this much, but since this is the beginning I want to write down every issue.  I know this is a common issue with all autistic parents so... This morning I got the call from the head insurance lady for my husbands company.  I was told that our insurance does not cover anything for autistic children.  No treatment, no therapy, no testing.  I started crying on the phone with her and I could tell it was not easy for her to tell me.  I'm kind of at a loss of words....Just the 2 basic tests I need right away are $8000.  His neurologist also prescribed ABA therapy, which is the only thing with clinical research and statistics that prove it helps autism and that therapy is $1200 per month.  Thats a house payment.  Not sure what to do or how to feel.  My friend told me that we could apply for disability.  She said autism is considered a disability.  I think I will look into that.  For now, we have put our house for sale and are planning on moving in with my mom.  You can't be prideful when it comes to the health of your children.  We aren't planning on staying there forever, but for the next few months we need to be able to afford all the testing and therapy we can.  Funny how God can humble you.  The girl who loves stuff has to give it up.  I'm so sad and worried about the future and what it holds for our family and Jacob.  I do know that when things like this happen its a chance for God to change our hearts and make us better.  I read somewhere that trials are not enemies of faith, but chances to prove our faithfulness to God.  I'm thankful to know that God is working on me and my heart.  This is no surprise to God, so I'm just praying for a miracle. 

Cret taking it all in...

It's been months since I told Cret that I thought Jacob was autistic.  At first he told me that he didn't agree.  Later, he said that if Jacob is autistic we were just going to work really hard and help him.  No matter what he has said about it, its been positive and loving.  Cret is what I like to call a "manly" man.  Not a lot of emotions, just strong and work oriented.  Last night, however, I had him read my blog.  I had downloaded pictures and he read every single post to the beginning.  Then something amazing happened....He cried.  He cried for one of the first times in our marriage.  I think the last time I saw him cry was right before our wedding when my sister lead him to Christ.  So I am just standing there, feeling like I want to jump up and down because it finally seems like we are on the same page, but obviously not doing that because that would be scary and a little awkward.  So I gave him a hug and asked him why he was crying and he just said, "Jacob."  I didn't know what to say.  I wanted to be a girl and say..."What about Jacob?" "Which part made you sad?" But I restrained myself because I didn't want this to be the last time he'd ever cry.  The reason I'm writing this is because as a woman, I want to be able to share everything about my feelings with my husband and I want him to understand everything that I'm feeling.  But God made us different.  God didn't make Cret a super emotional crier like He made me.  So what do you do when you feel like your husband doesn't understand?  I don't have all the answers to that, but what I do know is that you communicate what you can to your husband and then you find a friend or support group or blog that you can write about it.  Get some clarity.  Reread your thoughts so you can change your thinking in alignment with God if you see that you are heading the wrong way or write them to get your thoughts out.  When I feel like crying for hours, I start reading a mommy blog or writing my own and I feel better.  Of course I turn to my Father in hard times too and pray.  Who better can understand our sadness than God, who sent His son to die a brutal- death for us?  When I think about that, when I read about how Jesus suffered, my pain doesn't seem so bad.  Actually it makes me thankful.  I'm trying to keep a thankful heart through all of this.  Even when I'm crying my eyes out and Cret is looking at me like I'm a basket case, I am trying to stay thankful for him and my kids and for God.  God is so awesome.

Tuesday, August 2, 2011

The Insurance Crisis Begins

I have read many stories about families of autistic children that have lost their homes, huge families living in tiny apartments just to afford treatment for their children with autism.  They say the average family spends $100,000 on an autistic childs therapy and health.  Autism is generally considered a behavioral disorder and because of this most insurances don't cover treatment.  Even when people, like us, have behavioral health coverage most of these specific treatments are not covered.  Even though I have read that and even explained to people that most things probably wouldn't be covered, I never expected it to start so soon.  We just got his diagnosis yesterday and already we are denied coverage today.  Our neurologist ordered genetic testing and an MRI.  She said the purpose of these tests were to make sure that his autism wasn't caused by a genetic disease such as fragile x, ect.  The MRI will tell if there are any abnormalities in his brain.  Why isn't this covered?  What in the heck is the deal?  I am feeling so discouraged.  We drove all the way out to Texas Childrens and didn't get to do the blood work.  The scariest thing of all , though, is that even with just our high deductables we have had to make some serious sacrifices to be able to afford medical bills.  I have no idea where we go from here.  With no coverage we will be seriously limited to what we can even do for him.  That is not acceptable.  I will fight this. I will get him help.  The Lord knows whats happening and I will trust that He will guide me.  I have to constantly fight the urge to cry.  The only time I am even thinking clearly is when I type these things out and hear my thoughts.  I need to focus and lean on Him who gives me strength. 
  Thank you for all that you've given me.  Thank you for being holy and just.  Thank you for giving me this autistic child and thank you for the opportunity to live out my faith.  Help me to stay encouraged as this is only the beginning of the long journey I have with this illness.  Heal my baby and help me raise him to honor you.

Feeling Lonely

A while back I talked to a friend of mine who has an autistic son.  I told her that I thought my son was autistic and we discussed symtoms and different forms of communicating.  I asked her if she had heard of NIDS and if she did the gfcf diet.  Of all the discussion one thing that stood out in particular was that she said that it was so lonely to be a mom of an autistic child.  Its lonely to have a child that is different, constantly needing your help and attention in an extreme way.  You never stop thinking about it and never stop worrying and no one understands.  You find yourself hiding all the stresses of the day from your spouse to spare them from the anxiety.  You can't call your friends and talk about autism all day long.  She told me that even at school functions you don't really talk to the parents of other autistic kids because its just another reminder of how different your kids are.  Its lonely.  I didn't realize or even understand at the time, but now I do.  Having a child that is ill or challenged is hard.  Sometimes its so hard to just take care of them and teach them that you don't have energy to do much of anything else.  So if you're out there...feeling alone...know that you're not.  You're not alone.  You are a good mom.  And as many people keep reminding me God chose you to be this child's mom.  What a tremendous compliment that the God of heaven knew that you were the strongest best mom for this child with special needs.  Not all moms can handle it, but you can.  Trust God.  It takes a special type of person to handle this stress.  You are not alone. I am not alone.

Monday, August 1, 2011

The diagnosis: AUTISM

No matter how much I tried to prepared myself, nothing can really prepare a mom to hear those words..."Your son is autistic."  The neurologist, Melissa Jones, diagnosed Jacob with autism today.  I went in to the office unprepared.  I was anxious before the appointment and forgot all my notes.  Nevertheless, they had their own checklist.  I went through each list checking off what Jacob was able to do.  Out of about 35 milestones Jacob was meeting 4.  All 4 were gross motor skills such as standing up, cruising, climbing.  Some of the things on the list seemed so outrageous for a 13 month old, until I remembered even  my Tyler could do all of those things by then.  Its funny how I forget sometimes that my 13 month old is more similar to a 5 month old.  I forget because he is moving around so well.  She did some tests and evaluated him and said that she feels very confident in diagnosing him with autism.  I told her I was scared that she wouldn't be able to since he is so young.  She said it was obvious.  She also said that she was impressed that I had realized something was wrong so soon.  Most parents don't realize it until later.  Ha I wonder how impressed she'd be if I told her how long I have known for.  I told her that I decided to trust my gut and I had other kids to compare him to and I just needed to find out.  She was so excited for me because early inervention gives kids the best chance of a normal life.  I believe that is because these children have such a hard time communicating their needs and feelings.  If you can teach them to communicate early on then they have an easier time adjusting.  Our next step is to get him an MRI and genetic testing.  I asked why?  The doctor said there are certain genetic dieases such as fragile x that give a child autism, but develop into many much worse things as well.  There is a 35% chance that it is something genetic.  I am going to pray with everything in me that it isn't.  I immediately posted on my facebook for prayers.  I am such a strong believer in prayer.  My God loves me and wants to see me being faithful through prayer.  It makes me cry to see how many people responded.  I thank God for these special friends.  I thank God for a church family that truely feels like a family.  I thank God for a family who loves me and supports me.  I am so thankful for a sister that is my best friend, my role model, and someone to hold me accountable.  Mostly, I thank God for a husband who has stayed positive, seeing this diagnosis not as bad, but just as different.  Its just something different that we must handle differently.  He is such an awesome man. 
  You are so awesome.  Thank you so much for my family.  Thank you so much for my children.  Please give me wisdom and peace.  I'm scared and anxious, but I want to honor you through this situation and sometimes I don't know how.  Please help me. I love you.