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
Friday, June 11, 2010
grip...freedom...hope
grip 1 : to seize or hold firmly (What PANDAS D/O has on our son)
Friday, June 4, 2010
HOPEFUL Dot of Light!
I shared yesterday on FACEBOOK that: I see a dot of light down the tunnel of PANDAS D/O.
I pray that dot keeps increasing until you and Joshua are blinded by deliverance, my friend!
Praise God there is a small dot! I'm totally agreeing with Chelsea on that one!!!! Light that dispels the darkness & brings complete healing.
God is gracious. I love those moments of hope and light He gives us!!
I know his PANDAS D/O is still here. His neurologist shared that we should begin to see gradual progression over the next 2 weeks after his treatments. My heart is just overjoyed with this little dot of light, and I wanted to share it with you.
Thursday, June 3, 2010
HOPE through the waves!
I am having a nostalgic moment as I sit with Joshua today.
Watching archived videos I ran across this one when Joshua was 4. He had been dx with Autism 2 years prior. We were told that he may never talk.
As I see how this additional PANDAS D/O has gripped his life, and the journey he has ahead of him coupled with his Autism...this video just reminds me of what God has done and will continue to do in his life.
Father, may Your waters wash over him.
Tuesday, June 1, 2010
PANDAS D/O Word Action of the day: perseveration
The word meaning of our PANDAS D/O Journey today: per·sev·er·a·tion (pər-sĕvˌə-rāˈshən) a. Uncontrollable repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder. b. The tendency to continue or repeat an act or activity after the cessation of the original stimulus.
Regarding his steroid treatments. I have no idea if they are working. I am hoping we will see results, but if not, we will keep moving forward. I have been blessed that my employer has allowed me to take a week of FMLA to be home with Joshua as he has not been able to finish the school year at his school. He is a trooper.
“HE STORES MY TEARS…”
Section taken from:
By: Angel S. Thompson
Copyright Year: © 2006
Published by Unleashing Potential Ministries
It was a Saturday morning as I began to prepare for the day’s events at our ladies retreat when my friend, lying in her bed, looked at me and asked me quietly and gently, “Have you grieved about Joshua’s autism?” Being a pastor’s wife and the director of an autism group I stood there and thought for a moment, realizing that I do not “share” my grief openly…if I have grieved much at all. As I began to share with her my feelings and fears my heart began to weep as it displayed itself in tears. I shared that in light of everything I must remain strong, yet there are days that I sit and cry. I weep over the fact that the dreams I once had for Joshua were blown away like dust when we heard the word, AUTISM. I weep over the fear of what would happen to Joshua if something should happen to my husband and me. Would anyone love Joshua like we do, or would they not take the time to understand him and just send him away to disappear into his own world? I shared that I often feel that I have failed as a mommy as I sit weeping on the floor as my son is having a meltdown beside me.
I believe we all grieve in our own way. I believe my “grieving” is always before me when I see faces, stares and hear whispers. When family members try to blame us as parents and don’t support us and when friends disappear since our son’s diagnosis. It’s true; my heart grieves a little more each time for my son; the precious one who reaches out to love and be loved. This selfless boy who would and has given up his last raisin because his little sister asked if she could have one, or has seen his sister napping and covered her with a blanket. This little boy who, in excitement, tosses an object and it accidentally hits his sister and he quickly says, “Sorry sissy.” Then, just today, for the first time, wanting to make sure his sister was behind him said, “Come on, sissy, come on”, as we walked out the door.
When I sit and ponder “tears” and “grieving” I am reminded of several passages in scripture. “Those who sow in tears will reap with songs of joy.” Psalm 126:5
Another famous passage that causes me to stop and bask in the love my Lord has for me is found in Psalm 56:8. “Record my lament; list my tears on your scroll—are they not in your record?” In the KJV it says that he puts “my tears into thy bottle”. God knows each time I have wept. My grieving has not gone unnoticed and neither has your weeping.
There are so many other passages that touch on “tears”, Ecclesiastes 4, Luke 7, 2 Timothy 1, Revelation 7 and 21, 2 Kings 20:5.
Yet, there is one that always causes me to pause. Jesus’ dear friend was sick and dying. By the time Jesus arrived, Lazarus had died. One thing I noticed in this passage was something interesting. I would have expected Martha to be the voice in grieving while Mary sat weeping silently, yet in John 11:32, Mary cries out to Jesus. Her grief no longer contained and I can only imagine the emotions escaping as she fell to the feet of Jesus, “Lord, if you had been here, my brother would not have died.” (Do you remember the passage in Psalm 126?) Here was Mary at His feet weeping. He looks around and sees the others weeping and He is moved in spirit….and he weeps. Whether you grieve silently or openly, our Lord weeps with you, grieves with you in your pain, in your loss, in your struggles, in the midst of your uncertainty, in your….everything.
To answer my dear friend’s question, I guess I have and do grieve about my son’s Autism. Yet I don’t let it end there for I know with all the sowing in tears I have already reaped mounds of joy as I see what God has done in our son’s life and anticipate what He will do in the future.
As you sit this week and possibly reflect on the uncertainty in your own life I pray you remember this: You have a Lord who captures every tear, not one goes unnoticed and he is moved by your weeping. May you also know that one day we have the promise that all tears will be gone, all grief will end. (Revelation 7 & 21) Allow yourself to weep, and allow yourself to look beyond and reap the joy He has set before you as you walk in the midst of uncertainty.
Intimate moment with Christ
I remember when my counselor in college gave me permission to cry. What a freeing moment that was for me. If you have never felt that freedom, I give you the freedom and permission to cry, to weep and allow your God to capture your tears.
Monday, May 31, 2010
2008 Memory, FOREVER TRUTH!
No matter what Joshua faces, there is one person he goes to, one thing he asks to bring peace...he will ask us to pray to Jesus. I was reminded of a section that was published last year regarding Joshua and what I have learned from him. I wanted to share it with you. As we walk through this chapter and as you walk through yours.
A section 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 Ministries/AST
All Rights Reserved.
My son never ceases to amaze me…or rather, how he views God and how God points me to HIM through this precious little boy standing before me, who says the most profound things.
I am always in a study of prayer and recently it has led to a small study of the tassels of the prayer shawl. In the book of Numbers, God told Moses…rather commanded that they make tzitzit (seet-see), tassels on their cloaks. Tassels on all four corners with a blue cord on each. This was to remind them of God’s commands so they would not stray. Jewish men still wear them today, and I have come to know some Jewish women who do the same. What I found fascinating was that this very thing, and then the prophecy of Malachi brought a puzzle piece together for me in the New Testament. Rather, it added more to the event that took place.
The woman heard that Jesus was coming to town. She had heard of Him and the stories of those delivered by his touch. She knew she had to make her way to see Him. She had been suffering for years with a medical condition that left her bleeding. In some translations they say she had an “issue of blood”. I had a friend who had a very similar disorder and it left her weak and in pain most of her days.
So, here was this lady, making her way to Jesus…in pain, weak. The crowd was thick, so many people. I can imagine a lot of dust everywhere, heat. She sat down, and waited. After a while she looks up and sees Jesus coming, but now she lacks the strength. Do you know what her thought was? Of course you do. She thought that if she could but touch the hem of his garment, his cloak, his tzitzit she would be healed. Do you see the power in her thought and then in her action? She remembered Malachi’s prophecy.
Malachi 4:2
“But for you who revere my name, the sun of righteousness will rise with healing in it’s wings…”
She then acted on it. The wings represented his cloak. She was healed immediately. She found healing and peace in Jesus. Why do I say peace? Well, another thing I have begun to discover as I study, the word “Shalom”, which is what He said, “Go in peace”, means more than what we “think” it does. What do you think of when you hear the word, peace? No strife. No conflict. Harmony. Yet the Hebraic meaning goes deeper. To quote Rob Bell, “Shalom is the presence of the goodness of God. It’s the presence of wholeness; completeness…Jesus blessed her with God’s presence on her entire being.”
Now, how does my son figure into all of this? How have I been challenged by his “profound” statement and actions? The cross is his tzitzit. Every time he sees one, and it could be how the branches are on a tree, he is reminded of Jesus and immediately says, “Jesus is off the cross, thanks.” Tonight he saw a cross and he started talking about Jesus. Then he said something that I honestly will never forget…. “Jesus makes me feel safe.” Completeness.
You may not have a “prayer cloak”, yet my question is what is your “tzitzit”? What reminds you to keep your eyes fix on Christ? If you are His child, His desire is to bring you complete wholeness…even in the midst of what we walk through we can have completeness. Joshua has Autism & now PANDAS D/O, I still have Thyroid disease and Fibromyalgia…despite that, we have wholeness in Him because of Christ.
Sunday, May 30, 2010
OVERWHELM....QUIESCENCE...REFUGE.
It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:8)
The eternal God is your refuge, and underneath are the everlasting arms. (Deuteronomy 33:27)
The Lord is a refuge for the oppressed, a stronghold in times of trouble. (Psalm 9:9-10)
I have set the Lord always before me. Because he is at my right hand, I will not be shaken. (Psalm 16:8)
The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid? Though an army encamp against me, my heart shall not fear; though war rise up against me, yet I will be confident. (Psalm 27: 1, 3)
You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. (Psalm 32:7-8)
I sought the Lord, and he answered me, and delivered me from all my fears. (Psalm 34:4)
When the righteous cry for help, the Lord hears, and rescues them from all their troubles. (Psalm 34:17)
Those who love me, I will deliver; I will protect those who know my name. When they call to me, I will answer them; I will be with them in trouble, I will rescue them and honor them. With long life I will satisfy them, and show them my salvation. (Psalm 91:14-16)
The name of the Lord is a strong tower; the righteous run into it and are safe. (Proverbs 18:10)
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (Isaiah 41:10)
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)
Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you; you need only to be still. (Exodus 14:13a,14)
Friday, May 28, 2010
Treatment and Letting Go of the Why's...
So we are in the midst of Joshua’s first day of steroid tx's. The first dose this morning...and I quote, "It's fire, you made me swallow fire, my tongue is on fire." He then fell asleep and woke up at 12:30. This time we gave him chocolate milk to coat the tongue after lunch...no fire, but he did share, "That is made of fire, I know what fire tastes like." 2 more tx left for today.
As Joshua adds another adventure and chapter in his life, I was reminded of something God led me to write when Joshua was first dx with Autism. Just wanted to share it with you today.
Lord, thank you for the reminder.
"LETTING GO OF THE WHYS"
TRUE INTIMACY
Copyright Year: © 2005
All Rights Reserved
Published by Unleashing Potential Ministries
ISBN: 1-4116-3274-5
I remember when our son was diagnosed with Autism and the questions that began to flood my mind along with trying to find some reason as to why. Was it the stress during pregnancy? Was it hereditary? Was it the vaccines? Was it…? Our thoughts at the time were, "if only we could find a reason, something to blame it on then it would begin to make sense."
I can only imagine what Mary and Martha were feeling as they were burying their brother, Lazarus. In John, chapter 11, we can actually read what Martha was thinking as she lashed out at Jesus, blaming Him, stating through tears of anguish, "If only you had been here, then our brother would not have died."
Back in chapter 9 we read how the disciples were trying to make sense of a man's blindness. They wanted to know if it was his sin or his parent's sin that caused him to be born blind.
Two sets of people seeking answers, longing for something that would help them make sense of a situation.
Friends, have you found yourself in the midst of tears, crying out in anguish, trying to find the reasons why to circumstances of pain, whether it is the loss of a loved one, personal physical pain or watching someone you love struggle through a disorder? You are not alone. As humans we have a desire, a need to make sense of things. We want answers and have a hard time living in uncertainty. Let me share a verse with you, taken from the story of the blind man in John chapter 9.
Christ's response to the disciples was this, "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."
If we focus on trying to find the answers to "why", we will miss God's work in ours and others lives. From experience I have found that He can take something terrible and turn it into something wonderful that displays His greatness. We just have to be willing to leave the "whys" with Him.
"Your son is not here by chance, but by God's choosing. His hand formed him and made him the person he is. He compares him to no one else - he is one of a kind. He will lack nothing that His grace can't give him. He has allowed him to be here at this time in history to fulfill His special purpose for this generation."
Tuesday, May 25, 2010
Even the pastor’s wife...
I have been holding back a flood gate for months…I want to let go, but the dam's wall appears to be holding steady.
As I listen to Faith create her “song” on the piano keys…I know HE will provide. I know HE will heal. Through the morning and evening of watching PANDAS grip our son and knowing there is nothing I can do...I am exhausted. Now answering a phone call that just adds to uncertainty…my daughter comes up and wants to draw stars, and Joshua in a moment of peace…a moment, draws a cross on my arm.
Today, I just feel…I don’t know what I feel. Even the pastor’s wife has a moment of overwhelmedness. “OH ANGEL, BE STILL AND KNOW….”
Of course, that would be the verse He whispers through the LOUD chaos of this day, the chaos of PANDAS. Lord, a moment of quiet freedom…knowing that YOU will provide, that YOU will heal….THAT YOUR PURPOSE WILL PREVAIL. Lord, I am at a loss today…RESTING in You…all I can do.
Monday, May 17, 2010
PANDAS makes Autism seem like a cake walk
A friend sent me a message and she stated, "PANDAS makes Autism seem like a cake walk." I would have to agree with her.
The True Intimacy of Becoming a Water Walker
Published by Unleashing Potential Ministries, Wooster, Ohio
All Rights Reserved.
Joshua pays careful attention to details, those details that we do not see. If something is just a little off, no matter if mommy fixes it, it is too much for his little mind to handle, and it will set him into a melt down.
This morning was one of those moments. There was a bend in the wisp that I allow the kids to play with. Albeit it small, it was noticeable to him. He tried to fix it himself, however the bend was now very noticeable. I attempted to fix it, putting it back into its mangled wisp look. Yet, it was too late. All he saw was the bend from before. He could not see beyond what his mind grasped earlier and he could not handle it. He was on the floor screaming, hitting his head and heels on the floor. There was nothing I could do. Reassuring him only added fire to the already intense moment. So, I picked up around him. 20 minutes later he came to me with tears in his eyes saying, "hold you." Translated meaning "hold me mommy". So I picked him up and cradled him as we swayed, then we sat and rocked. 30 minutes passed with this 45-pound boy curled in my arms gently rocking in the chair.
As I think of my son's battle with Autism, I think of man in the Bible named David who was being pursued by Saul, a man trying to kill him. In the book of Psalms we read about David's struggles as his enemies were at his heels. We read about his fear and his anger. Yet we also read his songs of praise to God for His deliverance from his enemies.
Just as Joshua sought shelter in my arms from the fear and frustration he faces daily with Autism, so David sought that same type of shelter in the arms of God.
Psalm 18:1-6, 16-19
I love you, O LORD, my strength. The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold. I call to the LORD, who is worthy of praise, and I am saved from my enemies. The cords of death entangled me; the torrents of destruction overwhelmed me. The cords of the grave coiled around me; the snares of death confronted me. In my distress I called to the LORD; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears…. He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the LORD was my support. He brought me out into a spacious place; he rescued me because he delighted in me.
Just as quick as David could say, "Why, Lord…where are You, Lord…" He would regain his senses in the arms of God and praise Him, and continue his days journey.
After those 30 minutes Joshua looked up at me, arms open wide and said, "Thanks Mommy" as he embraced me with a hug. I said, "You're welcome, I love you." His response, "Thanks Mommy, I love you too." He then went onto the porch to play.
Life's walk is hard. The journey can be long, uncertain and at times fearful. Yet, with the knowledge that the Lord is there to "lift you out of the deep…to bring you into a spacious place…because He delights in you"…brings a sense of peace and realization that you can walk out onto your "life's porch", and He is waiting with open arms to rock you during those most difficult moments in your journey.
Intimate moment with Christ
Life can be overwhelming. Will you allow Him to cradle you today, to “sway” with you? David knew God could bring comfort, will you trust Him with your frustrations and fears?
Father, my days are so uncertain. I don’t know how I am going to make it through this week. I need your embrace today. Please allow me to experience the warmth of your presence in my life today. Hold me, sway with me, and give me comfort as I walk today. I am on my “life’s porch”, rock with me.
Photo above is a current photo of Joshua and I...this is how he falls asleep most nights. Right now he does not want to be away from either Matt or I.
Sunday, May 16, 2010
Broken Laugh Box?
laugh (lf, läf)
v. laughed, laugh·ing, laughs
v.intr.
1. To express certain emotions, especially mirth or delight, by a series of spontaneous, usually unarticulated sounds often accompanied by corresponding facial and bodily movements.
2. To show or feel amusement or good humor: an experience we would laugh about later on.
3. b. To feel a triumphant or exultant sense of well-being
Thursday, May 13, 2010
ON THE EDGE: Mom's moment
The phrase ON THE EDGE alludes to the danger of falling over the edge of a precipice.
As I think of that phrase and watch my son who lives in a world of Autism, now bombarded with PANDAS D/O that has erupted his state of living…it can seem as though we are ON THE EDGE.
Yet, as I STAND ON THE EDGE and look out over the precipice I am reminded that my Lord covered that PIT. Our circumstances do not define us as individuals, parents, children…people.
I can remember years ago being pushed into the precipice, tripping into the precipice and jumping head first. Years later I looked up and found a HAND pulling me out and covering it up…and I have moments where I look back and am reminded of that day when it is staring me in the face. Psalm 18.
Today, as a family, we stand on the edge of a vast precipice where the enemy desires to use it’s “presence” to “swallow” us whole. Yet, as I look out over it…I see the horizon filled with warmth and hope…as the wind hits my tears and my son’s as we share a PANDAS moment. Joshua 1:9
Even though his medication is helping with the tics, his functioning, sensory and view of his world continues to be in a state of confusion, chaos and fear. I called Matt as Joshua got out of his seat belt at the school and ran to the back of the van crying that he was too afraid to go in. He held his hands over his ears and wept. Making the 40 minute drive back to Geneva, I dropped him off at the church with Matt and I shared that I would be calling about “in home instruction” for Joshua to finish out the school year.
I have no idea what the special ed director will say, and I am not going to worry about what he may or may not approve. At this moment, as Joshua finally sleeps, Matt watches the CAVS game and Faith rests from the day, I will stand on the edge of this precipice and soak in the warmth of my Lord who has a purpose for Joshua…even in the midst of this uncertainty I am certain of this. Jeremiah 29.
Wednesday, May 12, 2010
PANDAS D/O & The Wall
Did you know that part of the definition of REST means: A device used as a support. I pause and smile as I read this: "The eternal God is your refuge, And underneath are the everlasting arms." Deuteronomy 33:27 HE IS MY REFUGE...MY...REST....MY SUPPORT....MY GOD!
For the past several...several months our son has been struggling. It has been 6 years since he was d/o with Autism. He has come so far and has accomplished so much. I stand in awe. It was a shock to us when he began to regress. When his days were filled again with crying as he became anxious, sad and he began to have "ticing" episodes that would happen within his sleep.
He reverted back into his world and there wasn't anything I could do, but pray. He would come to me, put his head on my arm and ask me to pray for him. He would ask me "what's wrong with me?"
After months his neurologist, through testing, found out that he has PANDAS D/O. Now begins treatment...and a long, long journey ahead. Each day I share with him his life verse in Joshua 1:9. Each day I claim that verse as well...along with Isaiah 43:2.
I was reminded of something I wrote after Joshua had been diagnosed. Wanted to share it with you.
WHAT IS YOUR "WALL OF JERICHO"?
By Angel Thompson
TRUE INTIMACY
All rights reserved
Copyright Year: © 2005
Published by Unleashing Potential Ministries
ISBN: 1-4116-3274-5
It has been a year since Joshua was diagnosed with Autism. At that time the world seemed to stop and the future for our son seemed blurry. Today, as I reflect back upon Joshua's journey so far in the world of Autism, I am reminded of another man's battle. They both share some things in common. His name was also Joshua and he was commissioned by God to take the city of Jericho. "Jericho was shut up like a drum because of the People of Israel: no one going in, no one going out. God spoke to Joshua, "Look sharp now. I've already given Jericho to you…" Joshua 6:1,2
So what did Joshua do? He believed and trusted what God said. He knew the character of God and he knew who he was in God. The only thing that lay between Joshua, the people of Israel and Jericho was a wall. God gave Joshua step by step instructions on how to conquer this wall.
First: March around the city once with the priests blowing on their horns. He told them to do this for 6 days.
Second: On the seventh day they were to walk around the city walls seven times with the priests blowing their horns. On the seventh round when the priests sounded their horns the people were to, "Shout! For the Lord has given you the city!"
Third: Take the city.
You are thinking, "That's a really nice story, but how does it apply to my life?" Brothers and sisters, we all have walls in our lives. Some walls are in the form of a disorder, like our son's and then there are walls built from the sin in our lives. Do you realize that through Christ we have been given freedom over the "city of death"? "
"For we know that our old self was crucified with him so that the body of sin might be done away with, that we should no longer be slaves to sin—because anyone who has died has been freed from sin." Romans 6:6-7
Now you are thinking, "What walls?" Those things that keep you from having a full and intimate relationship with the Lord and that keep you from healthy relationships with others. Those walls could be hatred, bitterness, a negative attitude, lusting, coveting, doubting, excessive worrying, pride, greed…to list a few.
So, what are the steps we need to take to fight the walls in our lives?
First: Trust God. If you don't know His character or who you truly are in Him, seek counsel through your Pastor or a Christian Counselor.
Second: Walk around those "walls". How? Spend time reading the Bible, the guidebook to break down those walls. Here are a few: Galatians 5:1; Philippians 4:ll-13; 2 Corinthians 5:21; Romans 8:31-37; 12:3; 1 Corinthians 14:33; 2:12; John 16:33; 2 Timothy 1:7; Psalm 1; James 4:7; Psalm 51; 1 John 1:4-10. Also, continue applying the first step.
Third: Even when the day seems hard and the light seems far away, "take the city"! In other words, claim the victory He has promised you.
"…in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:37-39
The walls our son faces everyday is a disorder that daily God is helping Joshua fight to break them down through our prayers and therapy.
What are your walls? No matter if they are from a disorder or sin, the same simple steps apply. Trust God, for your life is precious to Him. Walk around your walls through reading His Word and seek Christian counsel, and don't forget to take the city. He has given you the keys.
"Because you are sons, God sent the Spirit of his Son into our hearts, the Spirit who calls out, “Abba, Father.” So you are no longer a slave, but a son; and since you are a son, God has made you also an heir." Galatians 4:6,7
