by Angel Thompson on Monday, September 20, 2010 at 4:30pm
Thoughts of his mommy:
My heart is aching as I see him on this roller coaster ride that won't stop. Please let him off to take a rest, lock the doors and chain the gate so he is not locked in the PANDAS fate. Release, a pause, FREEDOM he craves....his obsession is more now than the papers he saves.
We have found that humor gets us through, yet with HIS PANDAS this is far from true. As there is no humor in the attack to his brain as if his whole purpose for being is now a runway train. One he cannot stop, the impulses to strong, the sadness overwhelms…all the confusion seems wrong.
Yet in the midst, he pours out a song…with the simple words that reach HIM amidst the PANDAS throng.
God I love you, you are so awesome, I love you, I love you, I love you.
So today as he questions his own face…I see and hear YOUR trace. It lies within the words of his song to You as he crawls through the PANDAS throng.
JT, we will walk with you through this throng....because OUR GOD is awesome and HE is there in the midst...no matter what, HE IS HERE!
Monday, September 20, 2010
09.20.2010 PANDAS D/O Journey: JT's daily life
Friday, September 17, 2010
HOPE in the midst...HOPE beyond....HOPE!
Our son was dx with Autism in 2004. In 2010 he was also dx with PANDAS D/O, a disease that is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that PANDAS, or a subtype of PANDAS, affects less than 200,000 people in the US population.
To learn more to go oasisautism.org
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever. The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep throat infection.
UPDATE ON JOSHUA
His neurologist has been amazing, supportive and has worked closely with Joshua. Joshua has gone through several steriod tx's in which he has become very tired of the "fire meds" and shared with me that he will take his usual medication, but not the fire meds.
His tics have decreased. He has an understanding of what PANDAS is doing to his brain and he is trying daily to work through the effects. He is still fearful of losing me that he continues to sleep in our room. His daily prayer is that God will take the PANDAS and let him be his old autism self. Last night he put together an activity for the whole family to do together called LEGO CHALLENGE. It was amazing and I will be posting it soon. He is taking one day at a time as we are. This will be a long journey. Yet, when he is feeling fearful his first response, even in the midst is to go to JESUS! What a testimony he is.
Sunday, August 29, 2010
What has been happening....?
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Short lines of the journey 8.04 - 8.29.2010
As we began to get out of the van last night from coming home from a meeting at the church Joshua said from the back, "JESUS, thank you for saving my life." We stopped and all then thanked Jesus for saving our lives....Matt and I teared. Through all of this chaos in his little life with PANDAS...he knows HIS ROCK!
August 4 at 10:55am
Joshua's Autism (PANDAS has increased his OCD...can you tell?)
Although, I do like the fact that he is so organized. :O)
(Actually, instead of looking at it as regression, I choose to look at it as his Autism is trying to bring order into the chaos that PANDAS has brought into his mind.) August 6 at 7:13am
Psalm 37:39 (the Message)
The spacious, free life is from God, it's also protected and safe. God-strengthened, we're delivered from evil— when we run to Him, He saves us.
August 6 at 2:37pm
As Joshua hides under Matt's desk at the church my heart is aching and attempting to maintain. My heart breaks for him and that there is nothing I can do but sit in silence with him as this PANDAS D/O brings such chaos to his thinking, functioning....LIFE. Sigh...LORD I know you are BIGGER! Please.....
August 8 at 10:43am
The straw, the camel, the back....our little girl finally had her breaking point last night with all the things happening with Joshua's PANDAS D/O and daddy's heart. I am so glad she knows she can come to me and cry and tell me how angry she is and how scared......pray for our proverbial backs to strengthen....this journey is HOT, ROUGH, STONEY, MUDDY, DUSTY, FOGGY….exhausting. Nahum 1:7, Joshua 1:9
August 14 at 12:38pm
Ladies of 8.12.2010: Thank you to my friend who waited as I sat with Joshua who was crying. Thank you to my friend who has experienced Joshua's PANDAS in full this summer and returned everyday to still watch and show him unconditional understanding and love. Thank you to my friend who came and hung out with me at the soccer game and after. You three know who you are and will know how much the moments have meant.
August 14 at 7:49pm
August 16 at 8:43pm
PANDAS...MEDICATIONS...."MOMMY MY BRAIN IS ALL MIXED UP!"...."I'M CONFUSED!"....ring, ring..."hello?" "Hi Angel, this is Dr. Reed......" (just breathe)
August 20 at
10:21pmThrough Joshua's tears of asking what has happened to him, and why is he so shy, and "I want to be the boy I used to be...what happened..." I was able to explain PANDAS to him. He then begged God to remove it and asked if his doctor could put him in the hosptial to remove it.
August 21 at 8:07pm
Pensive day...pensive weekend with all the events and things that took place inside my son's mind, my daughters expressions and dialect about life...waiting to see what God does today.
August 22 at 8:29am
PANDAS....AUTISM....ANXIETY....FEARS....Mommy please pray for me!!!!
August 23 at 8:20pm
His quote today...after one small thing stopped working....and a HUGE MELTDOWN...."Mommy, I JUST WANT MY OLD LIFE BACK." So, how do I encourage my little guy that this is a season....a very LONG season. He then stated, "I just want to be treated like an autism boy again."
August 24 at 8:51pm
2 days....he has been okay at school. I'm breathing....
August 26 at 10:29pm
Another steroid tx. Added meds.....
What he told Dr. Reed....I just want my old life back.
August 28 at 11:49am
“Mommy, I will take all of my medicine…I just can’t take the fire pills anymore.” What Joshua told me, while holding his tongue and crying after his last dose of his tx on day one.
August 29 at 5:09pm
Monday, August 2, 2010
Friday, July 30, 2010
PANDAS D/O VIDEO
As you know, Joshua was dx with PANDAS D/O (an interesting addition to his already dx of Autism back in 2004) We just finished our 2 steriod tx and are getting ready to contact his neurologist regarding an increase in antibiotics and possible IV tx. The attack on the brain is fierce and does not appear to take a break for our little guy at this time.
Wednesday, June 23, 2010
Bathrooms, Rootbeer, Legos and Anticipation...
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His journey continues.
I am amazed with how fragile the body is and yet how strong the spirit can be and how God can give more than an ounce of strength for a little guy to maintain as best he can.
I just wanted to share two quotes he made this past weekend that caused my heart to smile and a video he made.(he took 56 pics to make the movie) Over the years we have found that his computer and the internet is a way for him to calm, focus and recollect himself. Even though the Z key is gone....his little THINK PAD has been so resilient! Thank you Lord for that blessing.
During our small Vacation time with a wonderful family, the Simms', Faith, Joshua, Ben and I got up early to go play putt putt during the morning hours where there would be NO CROWD! As I came out of the bathroom he turned, swung his arms my way, pointed and said, "What a surprise, you were in the bathroom". That caused us to chuckle.
Then, as we were getting our putt putt gear, he asked for a drink. When asked what he would like he told the lady, "A root beer please, not beer, ROOT BEER, I'm just a kid."
Love it! It's the little things that are SO HUGE!
Today's acronym of PANDAS: Patiently Anticipating New Day Adventures...Seriously.
Friday, June 18, 2010
He meets HIM in a yard filled with dandelions…
Can I admit that I am tired? Is that allowed? No matter, I am going to admit it anyway.
We praise God for 2 days where Joshua was able to rest in his own bed and have intense laughter, where the paronoid feelings that someone wants to hurt him was decreased. It was a very nice vacation from those symptoms for him.
All though the symptoms are ever present, Joshua amazes me. I cannot put to words, but just know in my mommy heart all that he has accomplished so far and all that he has walked through and in the midst of all of it, he still goes to the ONE who died for him to find comfort. Not a day passes that he does not ask me to pray over his thoughts and ask Jesus to replace them.
Yesterday I left work early because he was struggling with a PANDAS moment, and as I think of this journey, I want to share a section I wrote in 2009.
He meets HIM in a yard filled with dandelions…
Section taken from: Life Inside the Box of a Jigsaw Puzzle
Finding God’s Grace, Strength, Hope and Understanding inside the Spectrum of Autism.
By Angel S. Thompson
Copyright Year: © 2009
Published by Unleashing Potential
All Rights Reserved.
My son has this unique relationship with God. I could sit here and say that I am envious and that I long for that, and yet the truth is…I can have that...I do have that…one that is individual and totally and fully “ours”. (Mine and God's)
The other day as I drove around on the lawn mower cutting our "field", I could not help but to be
captivated by my son who stood in the grass, dandelion “fuzz” flying around him, arms stretched
upward with his face towards the sky. He would stand still and then spin and then stop and sway as if hearing some sweet sound of music only known to him. Later he asked to ride with me and as he nestled his head on my shoulder I asked what he was doing with his arms up in the yard and he said, “Talking to God and praising Jesus.” When asked what they talked about he said “I cannot tell you, because that was God and I talking.” He had found his “prayer closet” and went there to talk with Jesus. Uninhibited by what was happening around him, he was able to “sift” through it and find solace with God.
To understand how profound that is….individuals that have an Autism Spectrum Disorder have a hard time “sifting” through all the noises and sensory things that invade our lives daily. As you are reading this there are sounds happening around you and yet you are able to sit and concentrate to comprehend what is on your screen. For people like my son, it is like the GRAND FINALE at the 4th of July happening inside their head all the time and they have to “sift” through it…so…you can understand why I sat in awe as God and Joshua met in that yard and he and Jesus talked and sang together. It was so intimate that Joshua did not want
to share the details, only that they "met"…because it was HIS TIME with HIS KING.
My son grasps the meaning of Ephesians 3:19, 20. He knows the power Jesus has in his life and he soaks up the fullness that he has been given because he belongs to HIM.
Do you know that you can know that fullness….that power….if you are HIS…it has been promised to you because HIS SPIRIT lives within you! I challenge you today to read Ephesians 3:14-21. Meditate on it, soak it in….then go find your “yard”
and meet Him there…..He’s waiting!
photo from our yard May 2009
