Archives for April 2013

ONE DAY AT A TIME

2 Corinthians 4:18
While we look not at the things which are seen, but the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

One Day at a Time. Say it again. One Day at a Time. Say it slower. One- Day- at- a -Time. I think we all need to be reminded of this. As parents of children with unique needs our lives are filled with so much, our hearts are hurting at times, we are weary, and we are always looking forward to what will be. I am personally guilty of looking too far ahead and not focusing more on the here and now. It is so easy to do.

I am really bad at the “what if’s and the “what will’s”. I am going to be honest here. I sometimes have thoughts of “what if he doesn’t graduate with a regular diploma”, “what if he doesn’t make friends”, “what if something happens to Tony or I, what will happen to Charlie?”. Those are just a few. I have learned and am continuing to learn to just take One Day at a Time. Sometimes it may be one minute depending on your day.
This last week has been a tough week for me. I am very busy at work. My daughter is going to graduate high school soon. Her brother Charlie was having a tough week. Their relationship is awkward at times. My house is a mess. I am trying to get my taxes done. The laundry is piling up. My husband needs my attention. My son with autism needs braces. My allergies are at an all-time high. You know, the normal life… I have letters stenciled on my bedroom wall that say: One Day at a Time! How come this is so hard to do?

I read a devotional every day by Sarah Young called Jesus Calling. About a week ago this is what my devotional was reminding me to do: take One Day at a Time.
I AM WITH YOU AND FOR YOU. You face nothing alone – nothing! When you feel anxious, know that you are focusing on the visible world and leaving Me out of the picture. The remedy is simple: Fix your eyes not on what is seen but on what is unseen. Verbalize your trust in Me, The Living One who sees you always. I will get you safely through this day and all your days. But you can find Me only in the present. Each day is a precious gift from My Father. How ridiculous to grasp for future gifts when today’s is set before you! Receive today’s gift gratefully, unwrapping it tenderly and delving into its depths. As you savor this gift, you find Me.

I just want to encourage you today to fix your eyes on what is unseen and trust in Him to supply all your need. Breathe in, Breathe out. You may have to squeeze a ball or something too , but take One Day at a Time. He already has it all figured out. God loves you so much and He understands all your anxieties and fears. He just wants you to come to Him and rely on Him to meet your needs and trust in Him. I really needed to be reminded of that today.
God Bless You!

Patty:)

100 Ways You Know You’re a Special Needs Mom

This is a great blog from another mom on this journey. We are warrior moms:) Patty
http://www.thisjourneyourlife.com/2013/03/100-ways-you-know-youre-special-needs.html

Chatting with Charlie about autism

Chatting with Charlie about Autism and how that makes him feel.

130421-191059

April is Autism Awareness Month

Do you know someone who has autism? Do you have a friend who has a child with autism? Do you have a relative with autism? Do you go to school with someone who has autism?

Chances are the answer to most of those questions is yes.

Autism is so vast in its definition and so broad. You can have 10 kids together all having autism and it all looks very different.

The important thing I want to share is to not see a label, a diagnosis. I want you to see my son and all his unique differences. Don’t we all have differences? I choose to look at his with pride and joy.

I love using people first language too with Charlie. I never say he is autistic. He is a person first with unique qualities that sometimes challenge him and other times make people marvel at what he knows and can express now. I tell people sometimes that he HAS autism, especially when we get strange looks or comments that are negative just to help give a quick swift explanation that people can understand and be sensitive too. Yes he looks down sometimes when you are talking to him. Yes he says how bored he is VERY LOUDLY during quiet moments. Yes he walks on his toes. Yes he cries and covers his ears when he hears loud noises or hears Bart Simpson anywhere. Yes he breaks out in a sweat instantly and flushed face when hearing his voice or seeing his pictures on video. IMG_6246_face0.jpg

This is my boy and I admire him so much. He works so hard. He really tries so hard to pull it together when the world is so challenging for him. He is my inspiration and joy. I love you Charlie!

Love,
Mom

My Son Met The Man

Tom Bergeron smaller photoCharlie loves to watch America’s Funniest Home Videos. He will play the same ones over and over again. Sometimes we have to tell him find another clip because he will watch it on his iPad and rewind over and over on the same part. He has done this for years.
Well, we were invited to go to the taping of the Grand Spectacular Show at Disney World. When we told Charlie he started to cry. We asked him what was wrong and he said he was nervous and scared to meet Tom Bergeron. I told him “no big deal” (that is our phrase when he says he is nervous or worried).
They day came, well I should say night. The taping was from 11:30pm -3:30am. We had to stand the whole time. We were blessed to be in the VIP section, the front row of the audience! WOW!
They gave us all these special mickey ears that light up. No one in Orlando has them yet.
We waited and then all of a sudden there he was walking up right beside us. Charlie turned and looked at me with the biggest smile:) He was so happy!
We taped for about 2 hours or so and then they had the grand finale choosing the winner and then all of a sudden all this Disney confetti and streamers came out all over the stage and they played “Celebration”. It was so much fun!
We were about to leave and were asked if we wanted pictures with Tom Bergeron. Uhhh, YES!
Charlie and his sister Chelsea went over to Tom and got several pictures. Charlie said, “Tom Bergeron it was very nice to meet you!” He smiled and said, “it was great to meet you too”.
We were leaving the park at about 4:00am and Charlie said, “Mom meeting Tom Bergeron was one of the highlights of my whole life!”

The episode will air on May 19, 2013.  Check it out and look for Charlie!

Gratefulness is Refreshing

IMG_6332

Psalm 28:7 ESV

The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him.

As the year was coming to an end for yet another time, I reflected on the things that brought me joy; those things that I am grateful for.  For some people it is just a list, but for me it is an accomplishment and reminder of God carrying me through some really tough times.

My son Charlie who was diagnosed with autism in 2004, he is the focus of my gratefulness.

Charlie’s Progress:

1)      Taking showers– Years ago taking a bath used to take a total of almost 2 hours from start to finish.  He would cover his ears and scream when the tub was being filled up.  He would scratch, hit me or himself to try to get out of the bathroom.  It would take about 45 minutes to get him in and then once he was in he loved it.  Then to get him out was another 45 minutes.  NOW he takes showers by himself.  He hears the water constantly running and it is ok.

2)      Hearing fireworks– When we first moved after his diagnosis to Orlando we didn’t realize how close our house was to Disney until the first night when we heard these loud booms and found out we can see and hear the Disney fireworks every night from our front porch.  We loved it, but Charlie not so much.  Every night he would run in his room and scream, slamming his door.  We thought what have we done?  July 4 for us as a family was dreaded because we knew it would be constant screaming.  He now doesn’t cover his ears, scream, run to his room, we even went closer to the fireworks show this year (with his earplugs of course) and he was able to watch them without screaming.

3)      Bathroom – This is one of his biggest achievements (and mine too).  This was the toughest for him.  His receptive language was lacking so he didn’t even understand going (being 5) and what it even meant. The reinforcers we were using weren’t strong enough for him to comply.  We did intervals the first 2 weeks with constant tantrums.  I thought, crying one day, will this ever work?  It took nearly 2 years for him to be completely trained.  This was almost 5 years ago and when he walks in a bathroom now I still sigh with a big smile and am so grateful for this.

4)      Words– Charlie didn’t start using his words till almost 4 years old.  How many of us can remember the first word your child said or the place where they said it?  I remember exactly where, when, and what was said.  It was, “YES”.  This is one of the biggest thing that I am grateful for…words.  They are powerful.  We still work on this being fluent but he is doing such an awesome job.  Words can even be via sign language or using an augmented device for others.  Being able to communicate is such a gift.

I am grateful for so many people that God has brought in our lives to help Charlie and our family.  We would have probably never crossed their paths if it wasn’t for Charlie’s needs.

1)   Our Church- We attend First Baptist Church of Windermere and right when we started attending they had started a Special Needs Ministry.  Our Pastor, Dr. Chuck Carter’s son also has autism.  It was and has been such a blessing.  It was a safe place for us to leave him and also have him learn about Christ.  It was the first time since his diagnosis that we as a family were able to worship all together and not be concerned about Charlie.  I will always be grateful to that.  Not all churches have places like this.  It has been a blessing.  Thank you Denise and Gina, among many others.

2)   His Teachers-Ms. Kim and Ms. LeVee (an ESE teacher and a regular education teacher) are among those that made such a difference in his life.  Both of these teachers looked at Charlie with lots of hope and were so positive.  I know it wasn’t easy at times, but they always had a smile and were encouraging.  I am grateful for their dedication and love.

3)   His Therapists- He has had so many of these in his short 11 years.  I feel these people have been key in his progress (ST, OT, Behavior Analysts).  They have given me such hope and actual skills to work on with Charlie.  They have taught me so much.

On those really tough days it is easy to get down, but I have always made the choice to look at where he has come and how much progress he has made.  So as 2012 has come to an end I am so grateful again for the many things that Charlie has accomplished and can’t wait to see what 2013 will bring for him and what other new things God will help him achieve.  Charlie’s sweet spirit of his love for Christ has grown so much this year and that I am grateful for the most.  I encourage you as you look to this new year think of the things you are grateful for as well.  Gratefulness can be so refreshing!

Colossians 3:15-20 ESV

And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

Patty Myers

https://www.facebook.com/autismblessing