Proverbs 3: 5-6
Trust in the LORD with all thine heart; and lean not unto thine own understanding.In all thy ways acknowledge him, and he shall direct thy paths.

Friday, April 18, 2014

Good Day!

It was a good day!

First, it is almost impossible for autism moms and/or special needs moms to get away. Two of my best and oldest friends stole me away today for two hours. It was the best medicine for me today. They did nothing but show me their love for two hours. Thanks so much girls!

Secondly, I received an email that my blog was featured on www.parenting.com
This made me REALLY happy. Two Brothers One Journey story is getting out there in the world and I couldn't be more thrilled about this.
Here is the link
http://www.parenting.com/parenting-advice/mom/our-mommy-blog-faves-autism-awareness-month?page=2

Thirdly, in Trenton's therapies today he responded with "no" when he didn't want to do something!!!!!!!!!!!!!!!! What parent is more than thrilled with their child saying "no" other than an autism mom?!?!?!?!?!!!!!!
Later in his speech therapy session he did the sign language for "yes".
Good Job Trenton!!!




Thursday, April 17, 2014

Kite

Before our life took another turn for the worse, the boys enjoyed flying a kite with Pops on Sunday.

Look at their smiles!!!! I love them!!!!





They loved it! Trenton said, "kite" great big when he saw what we were doing. Andrew loved it especially because it was a Cars kite and had Lightening McQueen on it!

What The Doctor Could have said...

For several months we all thought Andrew was 100% normal. Slowly, just like the change of seasons, he was taken away a little bit at a time.  The day that I knew in my heart that Andrew was on the spectrum was last September when I took the boys into Uncle Brian's house, a place where Andrew loved! That particular day in September, it was different. Andrew was scared. He would not let me put him down. He wanted Mommy to hold him while he fussed and cried. He was deathly afraid of a place that he loved at one time. The look in Andrew's eyes and the sound of his scared cry can not be described in words. Only other moms of children with autism know that cry and look.
That was the day I mourned the death of my normal Andrew. I cried and cried that afternoon. I hated everything and every thing this life was. I soon went back into survival mode and took notes on Andrew's regression.  I have several other situations and stories like that that happened but I never shared on this blog.

Another thing that started happening with Andrew about 6 months or so ago that was a huge indicator that he had autism was his behavior in the night. Some of his night time behavior reminded me too much of Trenton. Something really goes on in his brain at night. For instance,  any child who is neurotypical would be okay with either parent. At night time if Andrew would even see Tim, he started screaming bloody murder, would go straight into a meltdown and scream continuously for extended periods of time. His screams were so high in intensity that he could barely catch his breath.There was no consoling him until he saw me. This is Trenton's exact behavior in the night.

So was it a total surprise on Monday? No not at all. However, until I received the official stamp of autism, I held onto HOPE. A lot of things changed on Monday for the rest of our lives. Just a simple sentence....."He has autism.".....is so much more than three small words. What the doctor could have said was....

  • Instead of one child's future being unknown, now you have two children with an unknown future.
  • Instead of one intensive therapy schedule, now Mommy has two.
  • Instead of having one IEP team to communicate with, now Mommy has two.
  • Instead of one child's research to do, now there is two children's research to do.
  • Instead of looking forward to having some sort of normal family life through Andrew....that dream is gone.
  • The dream of total normalcy through Andrew is completely gone!
  • The dreams you had of Andrew making friends, having them spend the night at your house, playing T-ball is gone.
  • The dreams you had of Andrew playing sports, college, getting married, making me a grandma one day just may not happen now.
  • If you thought you were broke with one child's therapy bills...well guess what now????
  • If you thought your marriage went down the pipes with one special needs child...well...now I have no idea what to tell you.
  • Everything is going to be hard for Andrew. Nothing will come easy to him.
  • If you worried about dying and leaving behind one special needs child...well that worry just doubled! Now you are going to leave behind both of your special needs children.
  • Now you will worry every day who is going to take care of both of your boys when you are buried 6 feet under because you have no normal children.
  • If you thought Andrew would watch over Trenton in school and make sure the cruel kids didn't bully him or make fun of him....well....now Andrew is going to go through the same thing. Who is going to watch over them now?
  • It's a good thing you went to college but the only good thing that degree is going to do is help your own kids. You are never going to have time to work again in your life because you have two special needs children now needing their mom's undivided attention, support, love, dedication, and so forth.
  • Instead of dreading just Trenton's birthday now you are going to dread and spend the whole day crying on Andrew's birthday every year.
  • The nights you dreamed that you might be able to catch just one night of sitting on your couch for 30 minutes to watch the news is TOTALLY gone lady!
  • If you haven't "went off" on normal people who talk about nothing but their normal life in front of you....well guess what....that moment is going to be coming up real soon!
I could type many more things but I will leave it at that.


The good thing about Andrew is that the doctor said that Andrew has the potential to make great progress through his therapies. The doctor, who is known to be one of the most conservative doctors to diagnose autism also said..."Now, I'm not telling you he will make such progress that he will graduate college. The ones that graduate college who are on the spectrum are actually your people with Asperger Syndrome. I'm not telling you that he will not be quirky his whole life but he does have potential to make really big progress."

I would say in the majority of other families, Andrew would not have been diagnosed yet. Andrew is a case where the older he gets, his disability will be more evident. Andrew is just lucky to have me as his mom who has done nothing but eat, drink, sleep, and breathe autism since Trenton's diagnosis. More than less you can say, I have become an expert on autism and the  very early signs.




Tuesday, April 15, 2014

A Few Words

Yesterday I had no words....today I have just a few words.

Andrew's first visit with the doctor ended with the doctor informing me that Andrew had social communication disorder more than likely and possibly autism. Unfortunately, it didn't take long for the doctor to notice Andrew has highly restricted, fixated interests that are abnormal in intensity or focus ( strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest). In Andrew's case it is his fixation on Cars.
Andrew's speech is the same now as it was when he was 18 months old but with more echolalia. The majority of Andrew's speech is naming objects and echolalia. The doctor noticed this right away a month ago.
The doctor also noticed his inappropriate way to socialize. Andrew is different than Trenton, Andrew can notice kids and people. However, when Andrew is around other kids he does not know what to do. Therefore, he does everything the other kid does. If the kid that Andrew is around trips and falls, Andrew trips and falls. If the kid scratches his head, Andrew scratches his head. Like the doctor said.....its good he notices but bad he does this kind of behavior.
There is much much more, but this is a very short description of the three main areas for autism that Andrew meets.
Right now, I still fee nothing. I feel like I am in a daze. When I think of juggling two boys with two intensive therapy schedules, I panic. However, I will get through it. We will survive through our strength in the Lord!

I am a Mommy to two amazing boys who have autism. I am proud to be their mom!

I will post much more later when I am not so numb.

Monday, April 14, 2014

No words

I have no words. None.  I'm not sure what I feel right now so nothing can describe what I feel like.....other than numb.
Andrew was diagnosed with autism today. Like I said, I have no words. When I feel like talking about it, I will post more.
I introduced the fact that Andrew had issues a few months ago but left it at that after the majority of the people we know thought we were just worrying for nothing. I have kept a lot from this blog and there is no hiding it anymore. From now on, you will get the true side. There is no longer hiding my struggles that I have daily with Andrew. You will now read the full story of a family raising two boys who have autism on separate ends of the spectrum.
As for now, it is numbness!

Saturday, April 12, 2014

Autism is like the change of seasons

Driving home from therapy one day last week I noticed the grass was green outside. Every change of the season seems like it just happens over night. Every year I think, "Wow! We have green grass again! Look over there....we have a tree blooming again." It always sneaks in before we know. However, if you really think about...it really is a slow process. I'm sure one morning the grass that was still brown from the winter time actually had a few strands of green grass. Then the next morning had a few more and so on.
I couldn't help but think how much the change of seasons in Illinois reminds me of autism.

What do I mean??

Well......autism comes and sneaks into your child before you know it. The perfect, beautiful, healthy baby that you had the pleasure to give birth to slowly slips away. Autism sneaks in like a thief in the night and takes away everything you had dreamed and prayed for. You have the most amazing gift and that is a healthy baby (who you thought was just a difficult baby) and a happy family for a few months and then you start to notice one day that your healthy but difficult baby just doesn't look at you like he once did, if at all. Your healthy but difficult baby is suddenly 18 months old but still cries like a newborn all the time because the words he once had left him and he has no way to communicate anymore. Your healthy but difficult baby doesn't want you to hug him anymore but instead he would rather hit himself in the head or hit his family members. You start wondering why you can never take your child out in public and show him off because all he does is scream  and run way from you. Your healthy but difficult baby's sleep gets worse and worse by the day and month. You spend more time controlling meltdowns in the night than sleeping.  Your healthy but difficult baby would rather line toys up every minute of the day than to play with toys appropriately with Mommy. You soon realize that his world isn't about spending time with Mommy, Daddy, or any other family member, but its all about objects and obsessions.

You ask yourself every day what is going on??????  You and your spouse try to talk about it but all that does is end up in a HUGE argument. You try to tell your spouse that something is wrong but he disagrees which only makes the arguing worse. Instead of leaning on each other for support, your life takes you in opposite directions. Before you know it, autism has completely took over your son and your family life.

The dreams of healthy kids and fun family vacations are gone. Instead your life is all about autism, therapy, and finding your family's "new normal". Finding your family's new normal is hard to do when everyone else around you is living their lives like you were suppose to.  You still continue to try to attend family and church function when you can but NOTHING about it is relaxing. While you are constantly pacing around the house trying to calm your child down..... or keep him off the table...or keep him from breaking every item he can put his hands on.....you soon realize that not one person has even spoke to you because you are running around the facility chasing your child. All the while you hear in the background about people's vacations....or what their chlid is doing....or who they just picked to be on their fantasy football team.....or who just won the World Series.....or how they are planning on going shopping the next day.......and  all you want to do is to tell everyone to SHUT UP, BE QUIET, and start showing your child and family some common courtesy because you have been up for 36 hours straight and all you did the night before was drive your child around on the country roads from midnight to 4 AM to stop a meltdown. Therefore, you don't even want to step out of your house because everywhere is a constant reminder of normal life....even your own family functions.
What family members and friends don't realize is just how hard it is to hear about their life and that is so sad to admit and say.

The once normal shopping trips to the store for groceries becomes more painful each year. It is always a guarantee that you see someone your child's age. I don't know how many times I have been in complete shock watching a child Trenton's age that is normal because I am always amazed at what they can do.
The only way to not get yourself more depressed than what you already are is so simply STAY HOME in your prison cell.
 

Then before you know it, it's been two years of therapies and life with the "A" word....autism. Two years later and nothing is getting easier. In fact in some some ways, it is getting harder. As I was thinking about autism on my drive that day I also was thinking about the last time I had a good laugh. As many of you who know me personally, know that I had an unforgettable kind of laugh. I had a very distinguishable kind of laugh. I can't tell you the last time when I heard that laugh was. To be honest, I don't laugh these days. There is nothing to laugh about! I guess you can say I have a new laugh just like my new normal life.

The same goes for pictures of myself. I look at pictures of my pre-autism life and my eyes were so filled of life! I had eyes that were full of life! Now in pictures my eyes tell you how sleep deprived I am...how depressed I am....and how much weight I have gained from stress over the past few years.

Instead of waking up and looking forward to what the day brings, you look forward to when the house will be calm and quiet so you can get a few minutes of shut eye again. Your daily worries are much different than your next door neighbors. You worry each and every day about dying because you are the one person in this world that CAN"T DIE!! Death is on your mind daily because it can't happen to you. Your child needs you! If you aren't worrying about dying, you are worrying about who will take care of your child when you can't?? You know no one in any type of facitility will care for him like his Mommy. So yes instead of worrying about baseball or football games, you are a constant worrier about death.

As you can see, autism brings more daily struggles to families than you can imagine. Autism sneaks in slowly and takes away your child....autism takes the parents in the same direction or the opposite direction........autism changes your world and NOTHING will ever be normal again. However, it is the life we were given and I am proud to be  apart of  this journey and my autism blessings!




Thursday, April 10, 2014

How do you do it?

I am often asked, "How do you do it? How do you go on such little sleep and still have enough energy to help Trenton each day? How do you do it?"
Well, when you have no choice, you do what you have to do. I simply have no choice other than to give EVERYTHING to my boys in order for them to have the best life when I am no longer on this Earth.

One thing that helps me each day is the fact that I am a 100% believer of Jesus Christ and what he did for us. He did far more for me and my family than I am doing for my boys. Therefore, I live by this scripture....


Philippians 4:13 
I can do all things through Christ who strengthens me.

 I also live by the following scriptures...

  Proverbs 3:5-6
Trust in the Lord with all your heart,
And lean not on your own understanding;
In all your ways acknowledge Him,
And He shall direct your paths.

Philippians 4:6
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 

Joshua 1:9
Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.”

1 Peter 5:7
casting all your care upon Him, for He cares for you.

Matthew 11:28
28 Come to Me, all you who labor and are heavy laden, and I will give you rest.


John 16:13
13 However, when He, the Spirit of truth, has come, He will guide you into all truth; for He will not speak on His own authority, but whatever He hears He will speak; and He will tell you things to come.

James 1:2
My brethren, count it all joy when ye fall into divers temptations;

If I didn't have such strong faith, then I would not be getting through my days.