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. 

Jakey turns 1!!!!!



We were supposed to have Jacob's birthday party last weekend, but had to cancel it because everyone was sick.  So today on his birthday we had some people over.  There were only about 5 of us and when we sang happy birthday he screamed and cried.  Its so sad.  I don't quite understand why autistic kids have these major hearing issues.  There, I said it.  I think Jacob is autistic.  Actually I know in my gut that he is.  Cret doesn't think so, or maybe he is just trying to stay positive...  But what a precious blessing he is to me.  I love his challenges.  I feel like they're making me a better mom.  I am so much more aware of what the really important things in life are.  I am loving and appreciating everything that my kids do and say.  On that note...Jacob got his first tooth a couple days before his birthday.  Its so cute.  What wasn't cute was the fever, throwing up and crying that preceeded it. But it made its debut at the party and made him that much cuter.  Everyone hugged and kissed him and wished him a happy birthday. Anyways, it wasn't the normal birthday party, but it worked for us.

Trust

"I love you, O Lord, my strength. The Lord is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge, my shield, and the horn of my salvation, my stronghold." Psalm 18:1-2



God sent His son to die for me.  Many times I have reflected on my own salvation and questioned if I could do the same.  Would I still honor and love God if he chose to take Jacob in order to glorify Him?  I have to trust that God knows what is best for my life, for Jakey's life, and for His glory.   I have decided that I am putting Jacob in Gods hands. If God wants to heal Jacob then He will.  I have so many people telling me that Jacob is ok. Maybe I am just being paranoid.  Either way I am committing to pray for Jacob every day, all day.  More importantly I am going to try and have a thankful heart rather than a sad, discouraged, anxious heart.  I know I will fall short and worry, but I am going to keep reminding myself that God is in control.  As much as I love Jacob, God loves me and Jacob a million times more and in a more perfect way.  If God wants Jacob to be autistic then its for a reason.  I will embrace it.  I will, however, remain hopeful that he is just a little slow.  I guess we will have to see, but in the meantime I am making sure he is getting his therapy and keeping track of his milestones.  He still isn't meeting most milestones, but hopefully he will catch up. Eci has been coming for about a month.  We have seen some improvements in his weight, but not many in his development. I love love this boy.