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.

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. 
Lord,
  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.
Amen

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.

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. 
Jesus,
  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.
Amen

Frustrations

Since my whole purpose of writing this blog is to just let other moms dealing with this issue not feel alone I have to discuss something that has been bothering me.  There are so many people that keep telling me that Jacob is normal.  Not just that they hope he is ok, but that I am wrong.  Since we don't have a diagnosis I can't back my feelings up with that.  They look at him and then ask me in a "questioning my intelligence" manner, "Why do you think he's autistic? He looks so normal" or "I don't think he is autistic, he is probably just shy."  While I know they mean no harm, it hurts.  It hurts because sometimes I listen to them.  I start to question my judgement and then I think to myself...Nothings wrong.  Whats wrong with me?  Why have I been thinking he is autistic.  Maybe he is just a little slow.  No one else sees it so maybe I am paranoid.  Everyone always jokes that I am way to over protective.  Then reality hits....again.  I start to really watch him, read up on milestones and then it hits me like a ton of bricks all over again.  I get overwhelmed.  I get sad.  I get anxious.  I have decided that God gave me this child.  He didn't give him to anyone else and I am trusting my feelings.  I have prayed and prayed and in my heart I know something is wrong.  I strongly feel Jacob is autistic.  With that, I also know that the people questioning me are doing so because they love me.  They love Jacob and they don't want to see him as "not normal".  So I have decided to take it with a grain of salt.  I am not going to question myself anymore because I am Jacobs mom and I know best.  I will trust my instinct and listen to people knowing that they are just saying these things because they love me so much.  I have to accept that something is wrong with Jacob so I don't keep living on this rollercoaster.  I have to get out of this funk, sadness, and grief and just fight for him and get him help.  The Lord is so awesome to give me friends that love me so much they just can't see Jacob as different.  Thank you Lord for my friends. 

Texas Childrens!!!! Why?

I feel like SCREAMING!!!  The wait for the meyer center at Texas Childrens is over a year! I have emailed and called any and everyone that I thought could maybe help speed it up with no luck.  I called Humble pediatrics and told them.  I can not wait a year to get him into a doctor.  There is no way for them to speed that wait time up either so they gave me a referral to a neurologist in the mean time.  I am hoping that she can do some of the same testing that the meyer center does.  Now I will wait, pray, and hope that she has some answers. 

Dr. Butler

We had our extended appointment with Dr. Butler today.  My mom took off work to come with me.  We came prepared with a list of milestones that a 1 year old should have reached and were ready to discuss all of our concerns.  Dr. Butler walked into the office aware of why I was there (to discuss the possibility of autism) and started interacting with Jacob.  After that we started telling her all of our concerns.  She told me that she could tell there were problems right away before I even listed them out.  He isn't intimidated by strangers and wasn't even aware that she came in.  He didn't make good eye contact.  He does look at people sometimes, but it isn't that real connection.  So after much discussion she suggested that we see a developmental pediatrician at Texas Childrens Hospital.  She said that it does seem like either a neurological or genetic disease or autism.  She didn't give us a diagnosis, but at least we will be going somewhere that we can get one.  I'm really excited to finally get help, but I feel so so sad.  I feel sad for Jakey.  I want him to have a normal life or even just a full life.  I am scared because there is so much unknown about autism.  Almost everything I research contradicts other research.  I am praying for wisdom.  God, please help me to know which doctors to send Jacob to in order to get him the best treatment.  Thank you for blessing me with this child.